Retina International General Assembly 2012 Hamburg (Germany)Thursday, July 12th, 2012Location: Hotel Grand Elisée, HamburgStart: 09.00 a.m., end: 06.00 p.m.Room: Spiegelsaal

Appendix 6-1

6 Governance6.1 Business rules (Background paper)

BUSINESS RULES AND POLICY PAPERS

CONTENTSPage

Section A: Basic Business Rules 3Section B: RI World Conferences 7Section C: RI Membership Structure 9Section D: RI Fee System 14Section E: RI Fundraising Policy 22Section F: RI Travel Grant Policy 23Section G: Policy on the Use of the RI Logo 24Section H: PowerPoint Guidelines 25Section I: Accessibility Handbook for RI Conferences 31Section J: Simultaneous Interpretation: Advice to Speakers 35Section A: Basic Business Rules

Document Presented to the General Assembly, July 13th, 2000

Retina International,GA 2012, Hamburg-Germany pg. 1

1. Objectives

These business rules clarify certain procedures defined in the Constitution and should help to smoothly run the daily affairs of Retina International. They are understood to be subordinate to the Constitution. Since human and financial resources are scarce at Retina International, these rules should be designed such that they neither increase the financial or administrative burden of Retina International.

2. Governing Bodies of Retina International

The main governing bodies of Retina International are:

- General Assembly- Retina International Management Committee- Retina International President

The rights and duties of these governing bodies are laid down in the Constitution. The Management Committee and the Retina International President organise themselves, allocate task among themselves and are responsible to carry out decisions taken by the General Assembly and run the daily affairs of Retina International.

Their main regulatory tasks are:

- Preparation of the General Assembly- Financial affairs- Membership affairsIn case the Retina International President should not be able to fulfil his or her role and must resign during his or her term office, the Retina International Management Committee is responsible to run the daily affairs. It shall be their task to organise a General Assembly within 3 months of the President’s resignation to elect a new President.

3. General Assembly

3.1 Organisation of General Assembly

2

The Retina International Management Committee and the Retina International President are responsible for organizing the Retina International General Assembly.

3.1.1 Agenda and documentsA tentative agenda is proposed to the membership three months prior to the General Assembly. The definitive agenda, together with the relative documents, shall be sent to the membership 6 weeks prior to the General Assembly.

3.1.2 Delegates to the Retina International General AssemblyThe Retina International membership has the right to send delegates to the Retina International General Assembly according to their membership status described in the Constitution. The member organisations shall give written backing to their delegates. This paper shall be sent to the Retina International President 6 weeks prior to the General Assembly.

3.2 Nomination of Retina International officers

3.2.1 Call for nominationsFive months prior to the General Assembly the office of the Retina International President calls for nominations for the Retina International Management Committee and the position of Retina International President from the member organisations. The nominations shall be received by the office of the Retina International President in writing 3 months prior to the General Assembly.

3.2.2 Agreement of the nomineesThe office of the Retina International President asks the nominees whether they stand for election. If so, they are asked to submit:

- a letter of intent- a short Curriculum vitae

These documents shall be made available to the membership, together with the documents for the General Assembly.

3

3.2.3 Backing of the home organisationA person nominated for a position on the Retina International Management Committee or Retina International President requires the written backing of their home organisation.

3.3 Election of Retina International officers

If not otherwise required, the election of Retina International President and Retina International Management Committee takes place by secret ballot.

3.4 Acceptance of new members

The Retina International Management Committee asks for the necessary documents such as legal documents, annual reports, financial statements etc. required in preparation for a decision by the General Assembly.

3.5 Awarding the Retina International Conference

The procedure for awarding the Retina International conference to a prospective host country is laid down in the respective Retina International position paper.

3.6 Voting at the General Assembly

Voting usually takes place by risen hand with exception where it is stated otherwise in the Constitution or where the majority of the General Assembly decides a secret vote.

3.7 Voting by mail

Voting by mail should only happen in case of emergency or in matters of lesser importance or where time is lacking to organise a General Assembly.All member organisations shall be informed in writing about the issues at stake and the necessity for full members to vote. This shall be communicated in writing at least 6 weeks prior to closing date of the ballot and should clearly describe the issues being voted on. The

4

closing date for all ballots to be received as well as the expected date for a decision to be reached shall be clearly stipulated.

The Retina International Management Committee verifies the validity of the incoming ballots and announces the outcome of the vote to the Retina International membership by mail within 3 weeks after closing date. Decisions will be taken by majority of votes where it is not otherwise stated in the Constitution.

4. Financial affairs

4.1 Budget

The Retina International budget includes the basic costs of Retina International and is submitted to the Retina International membership in advance. It is approved either by the General Assembly or by written vote. The budget also includes the membership fees allocated to the individual member organisations.

4.2 Membership fees

Retina International members shall pay the fees allocated to them by April 30th of the current year. Members failing to pay their fees in due time may be sanctioned as prescribed in the Constitution. If a member organisation is unable to pay its fees, it may apply for special treatment to the Retina International Management Committee who will verify each case individually. In case fees are unrecoverable, they shall be written off. Such a procedure has to be submitted to the General Assembly for vote.

The membership fees will be allocated to the individual members according to the size and wealth of the member organisation. The members shall provide the Retina International Management Committee with their audited financial statements and background information.

4.3 Bookkeeping and audit

The Retina International President is permitted to spend the funds in accordance with the sanctioned budget. The accounts are kept in

5

agreement with the local legislation applying to the host country and are to be audited by the same body that audits the host member organisation. The audit report shall be submitted immediately after auditing to the Retina International membership, together with the balance sheet.

5. Membership

The Retina International Management Committee is responsible for the membership administration. The main documents are kept in the office of the Retina International President.

5.1 Current members

Current members shall annually submit:

- annual report- financial statement and audit report

These documents are essential for allocating the relevant level of fees to a member. A member organisation failing to provide these documents in due time will be relegated to a category that the Management Committee deem appropriate.

5.2 New member organisation

New organisations in a country where no Retina International member organisation exists shall receive as much support as possible and are included early into the communication network of Retina International. If such an organisation grows and feels able to apply for Retina International membership status, the Management Committee examines the documents and submits a proposal to the General Assembly.

6

Section B: RI World Conferences

Position Paper Presented to the RI General Assembly, July 13th, 2000

1. Background

The first RI Conference was held in 1978 in Baltimore (USA). Thereafter followed 10 international conferences, from 1984 onwards in a biennial rhythm. Conference places were Baltimore (1981), Helsinki (1984), Bad Nauheim (1986), Melbourne (1988), Dublin (1990), Johannesburg (1992), Paris (1994), Washington (1996), Lugano (1998) and Toronto (2000). The Conference 2002 is planned to be held in Chiba (Japan). Since 1984 the World Conference was combined together with the General Assembly of RI (formerly the International Retinitis Pigmentosa Association IRPA). In 1996 the first time a continuing education programme for the leaders of the member organisations was organised

2. Objectives of Conference

The main objectives of the RI World Conference are to educate persons affected with retinal degenerative dystrophies, their family members and friends as well as scientists and ophthalmologists about the disease and progress of research to find a cure for these conditions. Furthermore the conference should help to build up mutual support of affected persons and strengthen the relationship between affected persons and scientists.

3. Format of Conference

The RI Conference usually consists of a programme for patients and their family members and a conference for scientists or ophthalmologists. The conference contains common plenary sessions. Each host country may design the science/ophthalmologist part in a way that it serves best its needs. In case there is a feeling that emphasis should be given to educate and interest ophthalmologists, the programme should be planned accordingly. The host country also may decide to organise in parallel a science programme addressing a specific topic. It is important that the

7

programme covers the latest developments and speakers are of a good quality. The programme has to be ruled by the principle of sound science.Prior to or after the RI World Conference, the General Assembly and a Continuous Education Programme for the RI member organisations has to be organised by the host country.

4. Organisation

The host country is free to organise the conference in its best way. However, the final programme and the speakers have to be approved by the RI Scientific and Medical Advisory Board (SMAB). The General Assembly and the Continuous Education Programme for the RI member organisations have to be organised in close communication with the office of the RI President and the RI Management Committee.

5. Application for Conference

The Conference is awarded to a host country by the RI General Assembly. Preferably the host country is a member organisation in full membership status. The conference is attributed to a host country generally 4 years in advance by the RI General Assembly to allow for thorough planning and securing the financial resources. The Conference is attributed to a host country by the General Assembly with a majority decision.

For the first application, a letter of intent of the host country as well as a tentative conference plan have to be submitted. Two years prior to the conference, a detailed conference plan and business plan has to be submitted to the General Assembly. This letter has to cover also financial aspects of the conference to be held.

6. Responsibilities

6.1 Organisational responsibilitiesThe host country preferably in close co-operation with its scientific and medical advisory board, is responsible for the local organisation. They have to provide enough space to accommodate the delegates as well to make sure that no member country of RI is excluded due to

8

political, racial or religious reasons. The General Assembly and Continuous Education Programme have to be organised in close co-operation with the office of the RI President and the Management Committee. The final responsibilities lie with these two parties.The final programme and the speakers have to be approved by the RI Scientific Medical Advisory Board (SMAB).

6.2 Financial responsibilities

The financial responsibility lies with the host country organiser of the RI Conference. The conference has to be organised in such a way that it is accessible to the majority of its constituent members of RI. Delegates are to pay registration fees and have to pay their own travel fees. The organisers may provide for travel grants for underprivileged members or member organisations. However, this point is desirable, but not compulsory.

9

Section C: RI Membership StructureCreation of an Organisation-Based Membership

Extracted from a Paper Approved by the RI General Assembly, June 25th 2010, including amendments stipulated by the GA.

Background

Retina International (RI) has traditionally been organised on the basis of one member per country although the constitution, does allow for more than one organisation from a country when “the aims and objectives of the aforementioned organisation differ substantively from those of the existing member”. For example, the original member might be specialised in RP and the second in AMD.

RI recognises that some countries have worked hard to create one organisation in situations where previously two or more existed. However, we have to question whether the traditional model of one member per country is relevant to RI in 2010 and into the future.

There are a number of situations where the current policy is no longer appropriate. For example:

Some countries, particularly those that are very large, low or middle income countries, may find it difficult or nearly impossible to create one national organisation. China is a case in point. There is an existing RI full member in Hong Kong but it is likely that any future representation from within China will be on a regional basis. Also, RI has received an application from Taiwan. If RI had an organisation-based membership it would be possible for the organisations in Hong Kong and Taiwan to be full members, as well as other regional organisations from within Mainland China in the future if they decide to apply.

Sometimes two or more organisations do emerge within a country and may have overlapping areas of work. Under current RI rules it is difficult for both organisations to become members but it is difficult for RI to decide which organisation should be the member. At the moment it is usually done on a “first come, first served” basis but that is not necessarily fair or

10

in the best interests of all the retinal dystrophy sufferers in the country concerned.

If we keep the current system, RI will increasingly find itself in the situation where it will be required to refuse applications for membership. Is that desirable?

However, RI is conscious of the need not to undermine the efforts of countries such as Brazil that have striven to create one strong national organisation. Indeed such members will be encouraged to continue their excellent work and there will be no incentives to change under the new system. Many countries, perhaps most countries, will continue to be represented by one organisation.

Basic Principles

If a change is to be made from country-based membership to organisation-based membership, it is important that it must be done in accordance with the basic principles of RI. These are:

1. Patient-drivenRI is concerned with retinal dystrophy (RD) and its members are organisations which represent the interests of RD patients and their families.

2. Worldwide representationWe want the membership of RI to expand to all parts of the world and particularly those which are currently under-represented such as Eastern Europe, S.E. Asia, the Middle East, Latin America and Africa. This is important in order to provide help, support and information to as many people with retinal dystrophies as possible, while at the same time strengthening RI as an institution and making it genuinely able to speak for RD patients on a global basis. Therefore, RI seeks to expand and widen its membership.

3. Research focusRI has a strong focus on encouraging research to find cures and treatments for the various forms of RD, therefore, all member organisations are required to have strong links with researchers and clinicians in their own countries and to have a Scientific and Medical Advisory Board (SMAB) in place.

11

4. Not-for-profitRI’s objectives are concerned with encouraging research and supporting RD patients and their families. RI operates on a not-for-profit basis and the same stipulation applies to all members.

New Criteria for Membership

If the foregoing analysis is accepted then the criteria for membership of RI will be changed, as set out below.

Any organisation that: represents the interests of RD patients and their families agrees to the RI focus on research even if the particular

applicant organisation itself is focused on other matters such as welfare issues

has a SMAB in place. It is recognised that members with substantial research programmes will have more active SMABs than those funding little or no research where the SMAB may be a more informal group

has charity status in its own country. If such status does not exist in the country in question, the organisation must provide clear evidence that it is a not-for-profit organisation

has a constitution and a board or management committee has audited accounts if it is a stand-alone organisation or is part

of a larger organisation, such as a blind society, that produces audited accounts

is fully prepared to accept and sign up to the RI constitution and rules, including those that relate to payment of fees

Categories of Membership

A prevailing view among many who attended the RI conference in Helsinki in 2008 was that there are too many categories of RI membership; that they are confusing and a better and simpler system should be devised.

It is proposed that the new categories should be:

12

Full MembersAll organisations that satisfy the criteria outlined above. Most members will be stand alone organisations but full membership can also be achieved by retinal dystrophy groups that are organised as part of a broader organisation, such as a blind society. However, in the latter case the broader organisation in question must have a sub-group in place that specialises in the interests of RD patients, such as the group in Iceland. Full members have voting rights at the General Assembly.

Candidate MembersAll organisations that have already submitted an application for membership to RI or have stated that they intend to apply for full membership. It is recognised that the process of building an organisation can take some time and that some Candidate Members may remain within this category for a considerable period. Candidate Members would be invited to attend the General Assembly but would not have voting rights. The new Candidate Member category would include many members which are currently in the Observer, Candidate and Associated member categories. Candidate Members will be expected to pay scaled-down fees. It is proposed that members in this new category would serve a minimum of two years as Candidate Members before qualifying to apply to become Full Members.

Interested OrganisationsOther organisations including RD groups that are in the very early stages of becoming organised and established organisations that would never apply for membership in their own right, for example, blindness organisations that do not have separate RD sub-groups. Interested organisations would be encouraged to attend RI conferences but would only attend the General Assembly as observers and not have voting rights. Interested organisations would not be liable to pay fees but would be invited to make voluntary contributions according to their means.

Associated OrganisationsThis category includes companies and scientific institutes. Currently there are not any organisations in this category. Associated organisations would not have voting rights.

13

Implications for Governance

If the proposals in this paper are accepted then the General Assembly has to approve the respective changes in the constitution of RI and the MC will have to adapt the respective rules and policies.

Implications for Voting Rights

At the present time RI is organised on the basis of one country, one vote. It is proposed that we should move to a system of one member, one vote. However, we must avoid the situation where multiple organisations in one country could theoretically dominate the voting process. Such a scenario is thought to be highly unlikely. However, if such a danger emerged, it would be possible to devise a capping system to prevent a situation of undue influence for one country from arising.

Also, if fragmentation is perceived to be a problem, then the working of the fee system could be organised to act as a disincentive to the creation of excessive numbers of members (see below).

For the time being, while we do not have numerous members in any one country, it is recommended that we work on the basis of one member, one vote. If a situation of multiple members in any one country arises then the MC will prepare proposals to introduce a capping system.

Implications for the Fee System

At the present time the RI fee system is based on the gross national income (GNI) of the country in question. The rationale for the fee system is that an organisation in a high income country with a large GNI pays higher fees than an organisation in a low or middle income country with a smaller GNI.

There are basically three options with regard to the organisation of the fee system under an organisation-based membership:

14

Firstly, devise a totally new system but, bearing in mind the difficulties of creating the current system, this may seem unattractive and it would certainly be very difficult to obtain consensus.

Secondly, keep the existing system and divide the country fee between the organisations in the country. In this case the income of RI would only increase if an organisation in a new country joined but not if a second or third organisation in an existing member country joined. A way to increase RI income to reflect the extra work of another member would be to increase the country fee by a shared uplift figure of, say, 25% for each additional organisation. The fee would then be equally split between the organisations in the country unless they jointly agreed to a different percentage breakdown.

Thirdly, (the subsequently approved option), keep the existing system but require each member organisation within a country to pay the full amount of the country fee. Therefore, if there were two full members in the UK, for example, then each would be required to pay the fee that is currently paid by RP Fighting Blindness (formerly BRPS).

Outcome

The GA in Stresa 2010:- approved the change to an organisation-based membership.- approved the new membership categories- in terms of the fee system, approved the third option above- stipulated that associated organisations should pay fees to RI- advised that a clear procedure should be developed for dealing

with an application for membership from an organisation in a country where an RI member already exists

15

Section D: RI Fee System

Extracted from a Paper Approved by the General Assembly, 2nd August 2002

BackgroundAfter the dissatisfaction that was expressed at the GA meeting in Toronto in 2000 with regard to the way that the Retina International budget was divided amongst the RI members, the President instituted a Finance sub-committee to make recommendations to the GA in 2002.

Approach Description The proposed approach is a modification of how RI is currently structured. It is proposed that we use a four band methodology based on the World Bank’s Total Gross National Income data and whether a country is a full or candidate member of RI. The proposal involves assigning to each country, a fee based on objective data rather than on its membership or expenses. Member countries are placed into a band as follows:

Band 1 U.S.A. - pays four times the ‘base’ unit value (BUV). (see below for calculation of Base Unit Value BUV)

Band 2 - any full member that falls at 5% or greater on the GNI index; each member pays twice the Base Unit Value.

Band 3 - any full member that falls between 5% and 0.5% on the GNI index; each member pays the Base Unit Value.

Band 4 - very small (below 0.5%) and candidate members; pay 40 % of the Base Unit Value.

Which band a member falls into is determined by its position in the World Bank GNI table. The Management Committee would only reduce a member's band placement if, based on an objective review of its organization, the MC determined that the fee would result in an undue hardship for the Member. This would occur rarely. Also, if a member wanted to volunteer to move up one band, this would of course be possible. Listed below are RI members and the bands within which each member falls based on its GNI placement. The calculations are based on RI membership in 2001/02 and revised calculations will be made for each General Assembly.

16

Base Unit Value (BUV)

The Base Unit Value is determined by the total income required for a year as laid out in the RI budget (presented at each GA by the President), divided by the total number of units. Total number of units is defined as the number of members x each member’s band factor. Example:

Band 1 - 1 country (USA); 1 x 4 = 4 units Band 2 - 4 countries; 4 x 2 = 8 units Band 3 - 14 countries; 14 x1 = 14 units Band 4 – 9 countries 9 x 0.4 = 3.6 units Total units = 4 + 8 + 14 + 3.6 = 29.6 units

The total amount to be divided, is set at 15% greater than the required budget. This is to provide a reserve fund for unbudgeted items that come up over the course of the two years from GA to GA, together with a reserve to cater for any countries which may successfully apply to have their band reduced. The MC would be responsible for approving additions to the original budget, and band reductions. The formula for calculating unit cost is:

Total budget $ + 15 % = Base unit valueTotal number of units

Indicated below is an illustration of how the unit dollar value and country payments are determined.

Non-Payment

A member country will be placed in an appropriate band based on its World Bank GNI placement and a review by the MC. It would, therefore, be unacceptable for a member to not pay its membership fee. If a member requests a reduction in its band, it must show objective evidence that the assigned fee would create undue hardship for its organization. A second review would be instituted by the MC. A country could lose its full membership or candidate membership status in RI if it does not pay its membership fee for more than a year.

17

MEMBER BAND ASSIGNMENT

FULL MEMBERS Band Contribution Assignment

1 Australia 3 1X2 Argentina 3 1X3 Austria 3 1X4 Canada 3 1X5 Finland 3 1X6 France 2 2X7 Germany 2 2X8 Greece 3 1X9 Hong Kong 3 1X10 Ireland 4 0.4X11 Italy 3 1X12 Japan 2 2X13 Lithuania 4 0.4X14 Netherlands 3 1X15 New Zealand 4 0.4X16 Norway 3 1X17 Pakistan 4 0.4X18 South Africa 3 1X19 Spain 3 1X20 Sweden 3 1X21 Switzerland 3 1X22 UK 2 2X23 USA 1 4X

27.6X

OBSERVER (LATER RENAMED CANDIDATE) MEMBERS

24 Brazil Observer 0.4X25 Hungary Observer 0.4X26 Poland Observer 0.4X27 Portugal Observer 0.4X28 Romania Observer 0.4X

Grand Total 29.6 BUVs* X = a single unit of payment

18

* Total Countries Band One = 1* Total Countries Band Two = 4* Total Countries Band Three = 14* Total Countries Band Four = 9

19

ILLUSTRATION OF WHAT ACTUAL COST WOULD HAVE BEEN BASED ON 2001/ 2002 BUDGET

2001 2002Budgeted amount $33 000 $37 000Plus 15 % Reserve $37950 $42550Total Units per above 29.6 29.6Base Unit Value (BUV) $1282 $1438

BUDGET ALLOCATION PER COUNTRY ($)Band 2001 2002

1 Argentina 3 1282 14382 Australia 3 1282 14383 Austria 3 1282 14384 Canada 3 1282 14385 Finland 3 1282 14386 France 2 2564 28757 Germany 2 2564 28758 Greece 3 1282 14389 Hong Kong 3 1282 143810 Ireland 4 513 57511 Italy 3 1282 143812 Japan 2 2564 287513 Lithuania 4 513 57514 Netherlands 3 1282 143815 New Zealand 4 513 57516 Norway 3 1282 143817 Pakistan 4 513 57518 South Africa 3 1282 143819 Spain 3 1282 143820 Sweden 3 1282 143821 Switzerland 3 1282 143822 UK 2 2564 287523 USA 1 5128 5750

OBSERVER (LATER RENAMED CANDIDATE) MEMBERS24 Brazil 4 513 57525 Hungary 4 513 57526 Poland 4 513 57527 Portugal 4 513 57528 Romania 4 513 575

20

Annex 1 to Section DReasons for Selecting the World Bank GNI Table

It would be desirable for the fees of members of Retina International to be based on the income levels of the member societies but this is impossible because of lack of comparability in the way that income is calculated. Therefore, the proposed method of calculating fees is based on national data rather than society data. The basic principle within Retina International is that richer and larger countries should pay higher fees than poorer and smaller countries. A simple way of measuring this is to use Gross National Income (GNI) data. This reflects the total size of the economy of a given country, calculated in millions of dollars. This is better than using per capita income data because, in that case, Luxembourg would pay more than the USA. However, by using GNI data it is clear that the USA is by far the largest country followed by Japan, Germany and so on.

The full title of the selected World Bank table is "Total GNI 2000, Atlas method". The table is available at http://siteresources.worldbank.org/DATASTATISTICS/Resources/GNI.pdf

Atlas method refers to a way of converting exchange rates so as to limit distortions in cross-country comparisons. The latest table available at the time of writing (February 2002) is for 2000 and tables for later years will be used when available.

Extract of actual GNI data

Member Status Rank GNI 2000 %

USA FM 01 9601505 38.44Japan FM 02 4519067 18.09Germany FM 03 2063734 8.26UK FM 04 1459500 5.84France FM 05 1438192 5.76Italy FM 06 1163211 4.66Canada FM 08 649829 2.60

21

Member Status Rank GNI 2000 %Spain FM 10 595255 2.38Netherlands FM 14 297544 1.19Australia FM 15 388252 1.55Argentina CM 16 276228 1.11Switzerland FM 17 273829 1.10Austria FM 21 204525 0.82Hong Kong FM 23 176157 0.71Poland OM 25 161832 0.65Norway FM 26 155064 0.62Finland FM 28 130106 0.52South Africa FM 29 129171 0.52Greece FM 30 126269 0.51Portugal OM 33 111291 0.45Ireland FM 39 88597 0.35Pakistan FM 44 61022 0.24New Zealand FM 48 49750 0.20Hungary OM 51 47249 0.19Rumania OM 52 37380 0.15Lithuania OM 81 10809 0.04Total 24975370 100.00

22

Annex 2 to Section D

RI membership fee policy amendments approved at the GA 19th October 2006

1. On an annual basis, a member’s fee can only be increased to a maximum of 10%.

2. On an annual basis, a member’s fee can only be decreased to a maximum of 5%.

3. A new member will be placed into a special ‘new member’ category for 4 years. For the first 2 years, it will be invoiced at 50% of its membership fee; for years 3 and 4, it will pay 75% of its full membership fee; thereafter, it will be charged 100% of its membership fee.

Any member, with less than five years membership in Retina International, that feels that it is unable to meet the level of fees allocated according to the GNI, may apply to the MC to fall into this category, and be placed at the beginning of the ‘new member’ category. It would then follow the same payment schedule as described above.

23

Annex 3 to Section D

Rules for writing off unrecoverable fees approved by the GA on 2nd August 2002

The General Assembly 2000 in Toronto has accepted the following motion:

The motion was made that Retina International shall not write off outstanding amounts but that a set of guiding principles be added to the business rules as to when an amount should be written off or not. Any outstanding amounts at the time of the GA should be supported by a statement by the country concerned explaining their inability to pay and a set of disciplinary measures be added to the business rules to deal with this situation.

The MC has studied the question and resolved that the constitutional provisions would suffice and that the MC will act according to its internal procedure.

24

Section E: RI Fundraising Policy

Approved by the General Assembly, 19th October, 2006

Criteria for Receiving Non-Member Revenue

Any non-member monies received by RI must meet the following criteria:

1. Retina International will not endorse any company, or organization. Grants are accepted as unrestricted educational grants.

2. Retina International will not accept funds from any source that is in conflict with its mandate.

3. Retina International will accept a donation or grant from an individual, an incorporated company, a foundation, a government affiliated organization or a registered charity.

4. Donation or grant revenues will be used for baseline items, special projects or additional budget items; membership fees will support baseline items only.

5. Large grants from companies and foundations are published in order to ensure transparency

6. In securing funding from international companies, the national organization will be kept informed. Collaboration with the national organization is the preferred model.

25

Section F: RI Travel Grant Policy

Approved by the General Assembly, 19th October, 2006

When funds are available, the travel fellowship will be used to motivate, educate and assist young organizations to attend the RI Congress and GA Meeting. It will be granted according to the following criteria:

1. Grants will be allocated to candidate members and interested organisations.

2. An organization can only receive a single grant per Congress.

3. An individual will have to make a formal application in order to be considered for a grant. This application will have to be endorsed by his/her member organization and received by Retina International no later than four months prior to the month of the Congress.

4. The grant will be for a maximum of 50% of an individual's expenses. It will cover a portion of a person's transportation, accommodation and per diem meal expenses.

26

Section G: Policy on the Use of Retina International Logo

Approved by the General Assembly 19th October, 2006

1 Full Members and Candidate Members:

Retina International encourages full members and candidate members to use the RI logo at their discretion by co-branding with the Retina International Logo and/or the use of the phrase “A member of Retina International”.

The only restriction shall be that:

- The logo shall not be used without the Members own Logo.- The logo shall not be used in any manner to suggest that the office from which the communication derives is an office of Retina International. - The logo shall not be used in any manner to suggest that any views expressed in any documentation are the views of Retina International. - The logo will be available by downloading from the member’s only section of the website and shall only be used in the standard colours or in black and white and shall not be changed in any manner.

2 Interested Organisations:

Interested Organisations will be allowed to use the logo with the permission of the Management Committee and such use shall be restricted to specified items that have been approved prior by the MC.

No commercial use of the RI logo is permitted without the prior written approval of the MC of Retina International

3 Misuse of Logo:

The MC will investigate any misuse of the Logo. Should the offending member organisation not follow the advice of the MC the matter will then be brought to the GA for resolution.

27

Section H: PowerPoint Guidelines

Guidelines on how to make the use of PowerPoint and other visual presentations accessible to audience members who have a vision or print impairment

Published by the World Blind Union

Your audience

As you stand at the rostrum remember that your audience is not really made up of a group of fellow business tycoons, or potential customers, or civil servants, etc but, that it is made up of fellow people like yourself. Therefore, that means some might have refractive errors requiring the use of spectacles or contact lenses, some might have low vision or be blind, and some may have other print impairments such as dyslexia or colour blindness. What they will all share is a difficulty to follow and absorb the full impact of your impending presentation.

These guidelines offer you some simple guidance on how to maximise your impact by ensuring that your presentation, and your delivery technique, is as accessible as possible to all your audience members. They contain both practical information and good-practice guidance.

Remember – According to the World Health Organisation there are 314 million visually impaired people in the world today. 37 million are blind, 124 million are low vision after best correction, and 153 million are visually impaired due to uncorrected refractive error causing problems with distance vision. Additionally, it is generally accepted that up to 4% of the population suffer from severe dyslexia. Your audience may include people from all of these categories.

Help for those with Low Vision, Colour Blindness and Dyslexia

‘Low vision’ is a spectrum of see-ability, with some people having good peripheral vision enabling safe mobility, but difficulty in reading, whilst others with tunnel vision might be able to read with the help of

28

magnification. So whether using PowerPoint or transparencies, please:Use a high-contrast colour scheme easily visible from the back of a large room. We recommend either a white text on a dark background or dark text on an off white background. Please remember that a pure white background creates uncomfortable glare for people with low vision and dyslexia.

It is not possible to define a particular best colour combination that will optimise the legibility of your projected text for various reasons, including the fact that everyone’s level of sight is different. Please ensure you don’t have a background which is multi-coloured. If background images are desirable please use only a low brightness as otherwise they make text very difficult to read.Designing your presentation slides

This section looks at the ideal- Font size and quantity of text on a single slide - Font type- Colour and Brightness Contrast- Way to use figures and graphs- Animation- Way to orally support your slides- Supporting handouts

1 Recommended font size and amount of text on each slide

It is good practice to have only a few lines of text, or bullet points, on a slide, ideally no more than five to seven and only about five or six words per line, justified left. There must be enough space between lines to prevent ‘crowding’ effects during reading.

Text must be large enough to be read by most low vision people in the front of the audience and by people with normal vision in the back of the hall. Therefore, we recommend having no more than six lines of text with a line spacing of 1.5 on the slide, having allowed for a one inch margin on all four sides for headers, footers etc. This can be realized with character size of 48 point. We recommend this size

29

unless more space is needed for long words, but never using less than 32 point.

It is helpful to use mixed upper and lower case letters which are easier for low vision participants rather than all capitals.

2 Recommended font type

Please use sans serif font types such as Helvetica, Arial and Verdana rather than font types like ‘Times New Roman’, because low vision people have difficulty with reading text in font types with serifs.

Avoid the use of italic font style because this style is also difficult to read for low vision people and even hampers normal vision reading.

Try not to use more than one font type per slide. If you want some text to pop out, use a larger font size, or use bold style, for that text, to attract attention.

If information on the slide is only important for you as presenter, such as a header with the title of the presentation and the page number, keep this as small as possible to save space for the information that is important for the audience. 3 Colour and Brightness Contrast

Again, for some, colour contrast can improve see-ability, but different medical causes of low vision respond to different colours being contrasted.

Have you ever wondered if two colours, background and foreground, offer a good colour contrast for people with low vision?

Please find below a link to a very helpful online tool.

To open this link control and left click.

  http://www.snook.ca/technical/colour_contrast/colour.html  

30

When using this tool click on the slide bar icon of the Foreground and Background colour boxes. By sliding them to represent your intended foreground and background colouring, you must aim for a ‘Yes’ in the bottom section of the Results box.

There are two types of contrast - brightness and colour. The highest brightness contrast is between black and white. Objects have the highest colour contrast when they have complementary colours.

Examples of complementary colours are red & green and yellow & blue.

Be aware that contrasting full colours have no brightness contrast and thus cannot be discriminated by colour blind people. So the main contrast in a slide must come from brightness and not from colour.

Note that many people suffer from glare, so try to apply dark background colours (low brightness) and use bright colours (high brightness) for the text to please low vision and elderly people. A white font on a deep blue background is a very good combination.

Often, artists and designers prefer to use low contrasts. If you are one of them, be aware that your text and figures are difficult to read for elderly and low vision people. Furthermore reading can be difficult for every one under poor light conditions.

As said, text with high colour contrast without brightness contrast cannot be read by colour blind people. In particular, they have difficulty with red-green perception. These people have difficulty in reading green text on a red background. So when it is important to have a red background, it would be helpful to use dark red and apply white fonts or when a green background is required, use a light green background and a black font.

Be aware that many colour blind people are less sensitive to red. So we suggest not using a black font on a red background or red text on a black background.

31

4 Figures and graphs

If you have figures and graphs, keep them as simple as possible. Use brightness contrasting colours in the same way as with text, as above.

Use sans serif font types for the text in the figures and again never use more than one font type per slide and avoid the use of italic font style.

5 Animation

Please keep animation to a minimum as this can be very confusing for people with low vision.

6 Oral support during slide viewing

When you introduce yourself, explain the format of the session, when you will take questions (ie during the session or at the end). Make it clear if you are prepared to be interrupted to be asked to explain something.

It is helpful if all text presented on slides is read aloud by the presenterbecause for some low vision people sitting in the front of the audience, text and figures will still be too small and normal sighted people, in the rear of a large audience, may also have the same problem.

Figures and graphs should be explained because low vision people reading with a monocular, people with tunnel vision and slow readers, in the back of the audience, may have difficulty in orientating themselves to find where to start reading or viewing.

The presenter should explicitly mention the region of interest in the slide. Although pointing with a small light arrow to the region of interest is helpful for fully sighted people, it is not sufficient for those with low

32

vision or a restricted viewing field, since it cannot be identified quickly.

It is helpful to explain the slide in an expressive manner so that the audience understands where to look. For example:‘On the screen you see a diagram with four blocks. The block in the lower right corner …’

Be aware that some parts of a figure, for example, the legend of a bar graph are always difficult to interpret, even for people with normal vision. So another expressive description of a slide is recommended, for example:‘On this slide the results are summarised in a bar graph. The bars on the left hand side display the data of the experimental condition; the bars on the right hand side …’

You should be aware that not everyone in the audience is able to read a long text. So read the text, slowly and clearly. Don’t skip any word and be sure that everyone who wants to read themselves has time before you move on to the next slide.

If a long text is very important, for example a definition of an essential concept, refer to the handout for later re-reading.

7 Handouts

Please always distribute before the presentation, especially to low vision and dyslexic participants, copies of your slides together with important information that will not be presented on the slides. Handouts offered at the beginning of the session can be a useful point of reference and will tell the audience if further notes need to be taken.

Be aware that colour is lost in grey tone prints. This is another reason to use brightness contrast as the basic technique to contrast text and figures from the background.

Be sure that you have enough full page copies of your slides for people with reading difficulties.

33

Help for those who are blind

1 Have your material in accessible formats such as Braille, CD’s, or available on a memory stick for blind audience members to download on to their laptops. This will mean that, at least if a blind person cannot see the PowerPoint presentation, or read the handouts, they will end up with access to the same information as their fellow attendees at the presentation.

2 If you display it, say it. Imagine that you were hearing your own presentation on the radio, would it make sense and would you fully understand all the information that was being put across?

3 When talking through your PowerPoint presentations to your audience, use nouns. Pronouns on their own, as in: This leads to that, which is better than the other, is as good as a car without petrol.

Conclusion

The WBU recognises that visual aids are a standard feature of modern presentations, and often house styles and house colours are required to be incorporated into them. These guidelines are therefore not intended to be prescriptive, but rather as suggestions of good practice. They are designed to help users include all members of their audience, thus maximising the accessibility of the presentations for all audience members.

The accompanying PPT file demonstrates the difference between the use of and the non-use of these guidelines.

Copyright and Use of these guidelines© Copyright World Blind Union 2007

Whilst these guidelines are the copyright of the World Blind Union all interested parties may reproduce them in full, provided they give credit to the World Blind Union.

34

These guidelines have been prepared by the World Blind Union’s Low Vision Working Group, with support from the British Dyslexia Association.

For further information please contactWBU Low Vision Working Group

World Blind Union1929 Bayview AvenueToronto Ontario Canada M4G 3E8

Telephone:+1 416-486-9698

Fax:+1 416-486-8107

E-mail:info@wbuoffice.org

Website:www.worldblindunion.org

35

Section I: Accessibility Handbook for RI Conferences

Content1. Introduction2. Outdoor accessibility3. Indoor accessibility 3.1 Hotels3.2 Conference centre3.3 Social events4. Printing matters

1. IntroductionThis handbook defines the most important accessibility matters in relation to the Retina International Conferences and Retina International Business Days. We expect in general to receive about 500 blind or visually impaired people with very different orientation, mobility and daily living skills. As good hosts you may wish to make their stay as comfortable as possible. A sighted guide does not accompany a number of these people and it is our purpose to make sure that they can be as autonomous as possible. Apart from volunteers, this task can be ascertained by observing some main accessibility features. This handbook is meant to be work in progress and can be expanded whenever necessary. Especially the part on social events should be expanded as soon as the final programme is known.

2. Outdoor accessibility

Outdoor accessibility in this content means the accessibility to the hotels and conference centre:

- Steps to be marked by a contrast-rich band- Stairs: the first and the last step are to be marked- Glass doors are to be marked with contrast rich bands- Descriptions have to be extra marked with signs written in large

print white on dark blue- Use not only pictograms, but give also a written description (i.e.

restroom for ladies)- If possible a map of the city in tactile version should be added to

the conference bag

36

- All obstacles should be removed on the entrance way or at least very well marked with high contrast

3. Indoor accessibility

These requirements are valid for hotels as well as all locations where official events are taking place

3.1 Hotels

- All stairs and steps are to be marked- Glass doors have to be marked with high contrast- Restrooms have to be marked in large print and high contrast, if

possible tactile signs- All obstacles that are not necessary in the lobby area, corridors

and restaurants should be removed or marked in high contrast- Escalators and lifts should be marked inside and outside in Braille

and high contrast- Lights have to be improved should it be dim light (for visually

impaired people)- Hotels have to be ready to improve the light situation in the hotel

rooms of the visually impaired guests- Room numbers to be marked tactile and in Braille- Electronic keys to be punched or cut of an edge to assure easy

use by the blind guests- In each room should be a paper in Braille mentioning all the

different phone numbers for reception, room service etc. - A description of the TV and WFI access should be available in

Braille or large print or if possible on daisy- Mirrors should be marked with a rubber band- Menu and price list, especially also have the mini bar, should be

available in print and daisy- Hotels have to be ready to put more staff during the breakfast time

in the breakfast area in order to assist alone travelling blind people- Hotels have to be ready to accept training for their staff for

assisting blind people- Hotels have to be ready to show guide dog owners an area where

the dog can be cared- Hotels have to accept guide dogs

37

3.2 Conference centre

- All steps to be marked- Obstacles to be marked - All glass doors to be marked- Restrooms should be marked in large print as well as tactile! In

order to make the life easy for participants, during the breaks volunteers should be in the restrooms assisting blind and visually impaired people to find the stalls and afterwards the basin and cleansing towels

- In case the flush is badly visible, mark the flush bottom in high contrast!

- The micro system has to be marked tactilely and a description of the functioning should be in the conference bag

- All signs should be in high contrast and pictograms should also be explained in words

- Escalators and lifts should be marked inside and outside in Braille and high contrast

- During breaks and end of sessions, volunteers have to be posted near the escalators to assist blind people without guide

- A tactile map should be placed near to the entrance- A paper in Braille describing the conference centre and the items

available should be added to the conference bag- Braille menus as well as menus in large print should be available

at the cafeteria - All conference rooms should be marked in large print (white letters

on dark blue background)- A description of the WFI access in the conference centre and

possible support should be added to the conference bag- A description where to find the allocated area for guide dogs has

to be added to the conference bag and staff to be instructed to accompany guide dog owners there if necessary

3.3 Social events

- All steps and stairs are to be marked in high contrast- Restrooms to be marked in large print and high contrast- All glass doors have to be marked as well as obstacles- If drinks have to be paid for (cash bar), a price list should be set on

each table in Braille and large print

38

- Make sure that the meals are in a contrast rich form to the dishes- Avoid if possible stem glasses, use instead tumblers- Make sure that the music is not too noisy and that there are breaks

allowing discussions and talking!- Make sure that all-important information is given to all participants

by loudspeakers!- Be aware that moving blind people takes at least double time of

moving sighted people, i.e. allow enough time to transfers and boarding

4. Printing matters

- Be aware that Braille printing needs a lot of space and therefore keep all documents as short and concise as possible

- Be aware that English is for most people not the native language and therefore keep the documents simple

- For printed matters use 14 points Arial font in fat or the SFB style sheets

- Use no space bar keys for spacing out between words or for formatting, since this creates enormous problems in translating the document into a Braille document or to large print

- Use straightforward layout and now spacing of words - Do not use colours, since a number of visually impaired people do

not see colours at all or may see only part of the colours- Make sure that the document size is small to allow download also

with restricted technical opportunities or skills- Do not use PDF-files- Give the possibility to download word or text files- Describe logos when they have to be put in for sponsors- Lunch checks or tickets for social events should be marked also

tactile - A description of the tactile marks of lunch checks etc. has to be

added to the conference bag- All printed matters should be available on daisy. This CD should

be added to the conference bag- People should be informed that the material will be available on

daisy CD and that they should bring along their CD-player

Zürich, May 2008

39

Section J: Simultaneous Interpretation: Advice to Speakers

The organizers of the conference will provide professional interpreters who will communicate your message to the delegates who do not speak your language. You can help them in that task by following these simple guidelines:

1. If you have prepared a speech or notes for your speech (even if you do not intend to read them), please make sure that the interpreters receive a copy so that they can become familiar with your subject and terminology. Since our role is to convey the meaning of your statements, do not hesitate to stray freely from your text. Since interpreters are bound by professional confidentiality, your document will be quite safe with them.

2. If your paper is very technical, you may wish to give the interpreters any technical vocabulary that you may have. You may also ask the conference secretariat to organize a short briefing for the interpreters.

3. If you want to make a PowerPoint presentation or show a film or transparencies, make sure that the interpreters have a copy of the script or text. The interpreters are usually located far from the screen and it will help them considerably if they have those documents.

40