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Patient representatives at ERS Congress 2020 Information and registration handbook
This handbook provides practical information for patient representatives attending the ERS Congress and explains the registration process
Contents
Topic Page
ERS Congress……………………………………………………………………………………………………….. 2
Patient representatives at ERS Congress……………………………………………………………… 2
ELF Patient Organisation Networking Day…………………………………………………………… 3
World Village………………………………………………………………………………………………………. 4 ELF stand………………………………………………………………………………………………… 4
Hot desks………………………………………………………………………………………………… 5
Registration and bursaries: Members of the ELF Patient Advisory Committee (PAC)…………………………. 6 Patient organisation representatives………………………………………………………. 8 Patient representatives attending meetings……………………………………………. 10
Further support……………………………………………………………………………………………..……. 11
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ERS Congress
The European Respiratory Society (ERS) International Congress is an annual event. It gathers over 20,000 delegates from around the world to share the latest findings and practices across the field of respiratory medicine.
The ERS Congress 2020 will be held on 5 – 9 September in Vienna, Austria.
You can find more information about the ERS Congress at erscongress.org.
Patient representatives at ERS Congress
The European Lung Foundation (ELF) is committed to ensuring patient representatives can attend the ERS Congress and contribute their valuable expertise to the programme.
Patient representatives include: • members of patient organisations in the respiratory field; • people who have been diagnosed with a respiratory condition; and • family members or carers of a person with a respiratory condition.
Over the last few years, ELF has welcomed a growing number of patient representatives to the Congress, from a huge range of countries, organisations and lung conditions. There are many activities and sessions that patient representatives can get involved in.
For information about how to register to attend parts of the ERS Congress and bursary eligibility, please follow the instructions under the section that applies to you.
• Patient Advisory Committee (PAC) representatives (pages 6-7) • Patient organisation representatives (pages 8-9) • Patient representatives attending meetings on behalf of ERS/ELF (page 10)
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ELF Patient Organisation Networking Day
ELF Patient Organisation Networking Day is held during the ERS Congress. It brings together representatives from a wide range of respiratory patient organisations across Europe, as well as some respiratory healthcare experts. It is an opportunity to share good practice, ideas and build partnerships.
Activities on the day include: • presentations on innovative
practices; • discussions on important topics;
and • fun activities.
This year’s Patient Organisation Networking Day will take place on Saturday 5 September 2020. There will be opportunities to learn and share expertise and ideas for developing patient involvement and collaboration. There will also be the opportunity to network with healthcare professionals.
Please note that the ELF Patient Organisation Networking Day and the ERS Congress are held in English. Registration for the patient organisation networking day is free and each organisation can register as many representatives as they want. Please follow the instructions in the section that applies to you.
If you would like any more information about the day, please email [email protected]
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World Village
The World Village is a space for networking, sharing experience and learning about other patient organisations and medical societies from around the world during the ERS Congress.
Opening times: • Sunday 6 September – Tuesday
8 September, from 08:30 to 17:00; and
• Wednesday 9 September, from 08:30 to 12:00.
A programme of sessions and presentations taking place in the World Village will be provided nearer the time.
ELF stand
ELF invites patient organisations attending the Congress to join the ELF, Healthy Lungs for Life and patient organisation stand in the World Village.
There will be the chance to display your organisation’s logo on the stand and share some promotional materials, such as leaflets and flyers. This will help to showcase the diversity of patient involvement and advocacy across Europe.
If you are only attending the Congress on Saturday 5 September, you will be able to leave a small amount of your organisation’s materials with a member of ELF staff to add to the stand on your behalf.
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Hot desks (relevant to PAC member organisations only)
Some organisations in the ELF Patient Advisory Committee (PAC) may be eligible to apply for their own space next to the ELF stand in the World Village. This will include a ‘hot desk’ with your logo where you can place printed materials and display visual information, such as a poster.
Eligible organisations include: • European-level organisations representing a single or multiple lung condition; and • National organisations representing all lung conditions.
Spaces are limited and eligible organisations will be invited to apply within the registration form for PAC members (see page 6). The deadline to apply for a World Village space is Tuesday 30 June 2020.
Space in the World Village is limited. Organisations are not permitted to bring roll-up banners or large posters. If you have any questions about whether your materials will be allowed, please contact [email protected]
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Registration and bursaries for members of the ELF Patient Advisory Committee (PAC)
This section is relevant to one representative from each patient organisation in the PAC. Additional representatives from PAC member organisations should go to the registration and bursaries for patient organisation representatives on page 8.
Current members of the PAC are listed in the table below.
ELF Patient Advisory Committee Members
Associação de Transplantados Pulmonares de Portugal (ATPP)
Asthma Society of Ireland
Asthma UK and British Lung Foundation partnership
Cystic Fibrosis Europe
Czech Civic Association Against Lung Diseases (COPN)
European Federation of Allergy and Airways Diseases Patients’ Associations (EFA)
European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF)
European LAM Federation European Pulmonary Hypertension Association (PHA Europe)
Federasma e Allergie
Fundación Lovexair
Irish Sleep Apnoea Trust
June Hancock Mesothelioma Research Fund La fédération française des associations et amicales de malades insuffisants ou handicapés respiratoires (FFAAIR) Longfonds
Österreichische Lungenunion
Pulmonale Hypertension Belgium Respira – Portuguese association of people with COPD and other chronic respiratory diseases Romanian TB Patients Association
SarcoidosisUK
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In recognition of your contribution to ELF’s activities, members of the PAC will receive one full free registration per organisation to the ERS Congress.
In order to be eligible for free registration and a bursary, we ask that a member of your organisation completes the ELF patient organisation network transparency survey. This will allow us to update your organisation’s details before you register to attend the ERS Congress.
The PAC representative receiving free registration must attend Patient Organisation Networking Day on Saturday 5 September and the PAC meeting on Monday 7 September at 11:00-13:00 CEST. If the representative cannot attend the meeting, another member of the organisation should attend in their place.
Free PAC registration and bursary applications must be completed on the following form: ERS Congress 2020 – Registration for Patient Advisory Committee Members. The deadline for PAC members to apply for free registration is Tuesday 30 June.
Bursary eligibility
PAC representatives from organisations based in a single European country are also eligible to apply for a bursary. PAC representatives from European umbrella organisations or global organisations are not eligible for a bursary.
• €350 bursary: open to PAC representatives whose organisation is based within 150 kilometres of Vienna
• €700 bursary: open to PAC representatives whose organisation is based further than 150 kilometres from Vienna
The deadline to apply for a bursary is Friday 17 April 2020. You will be informed whether you will receive a bursary by Friday 1 May 2020.
Checklist for PAC representatives Deadline Tick once complete
Complete the transparency survey Before completing the registration survey
Complete the survey for free registration 30 June Apply for a bursary 17 April Apply for a hot desk 30 June Send your logo to ELF 31 July
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Registration and bursaries for patient organisation representatives
This section is relevant to: • paid staff and volunteers linked to a respiratory patient organisation that is not a
member of the ELF Patient Advisory Committee (PAC); • paid staff and volunteers linked to a respiratory patient organisation who are not
attending any meetings on behalf of ELF (if you are, please see page 10); and • additional members of PAC organisations (listed in the table on page 7) who are not
receiving free registration.
To register to attend the ERS Congress, you must be affiliated to a patient organisation in the ELF patient organisation network. New organisations can join the ELF network for free by completing the ELF patient organisation network survey. Please note that if your organisation joined the network before 1 January 2020, you must complete the transparency survey; this will allow us to update your organisation’s details before members register to attend parts of the ERS Congress.
ELF Patient Organisation Networking Day
If you would like to attend ELF Patient Organisation Networking Day, please complete the online form: Registration for ELF Patient Organisation Networking Day, Vienna 2020. You may also be eligible to apply for a bursary on this form.
Bursary eligibility
European umbrella organisations, global organisations and national organisations based outside Europe are not eligible for a bursary.
€350 bursaries are open to: • representatives attending Patient Organisation Networking Day only; and • representatives attending the full ERS Congress who are based within 150 kilometres
of Vienna and do not incur significant travel or accommodation costs.
€700 bursaries are open to: • representatives attending the full ERS Congress from Saturday 5 September –
Wednesday 9 September.
There are a limited number of bursaries available and they will be allocated based on the reasons given by applicants under question 12 in the online application form.
Deadline to apply for a bursary: Friday 17 April 2020. Deadline to register for ELF Patient Organisation Networking Day: Tuesday 30 June 2020.
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Attending additional parts of the ERS Congress
Patient representatives have a dedicated Congress registration category and reduced cost. The patient representative category aims to make the Congress more affordable and accessible. The costs for 2020 are outlined in the table below.
Patient representative registration Cost
Saturday Pass Patient organisation networking day
Free
1 Day Pass Sunday or Monday or Tuesday or Wednesday
€60
Full Congress Pass 5 days, Saturday – Wednesday
€105
Patient representative registration is open to paid staff and volunteers linked to a respiratory patient organisation that is a member of the ELF patient organisation network. New organisations can easily register online for free to join the network.
Registration to attend additional parts of the ERS Congress from Sunday 6 September to Wednesday 9 September will open on Tuesday 7 April 2020. You must register via the ERS Congress website, at https://erscongress.org/registration-2020
If your registration is approved (if you are eligible for the reduced patient registration fee), you will receive an invoice to pay the appropriate fee (listed above). Once you have paid the fee, you will receive confirmation of your registration.
Checklist for patient organisation representatives
Deadline Tick once complete
Complete the transparency survey Before completing the registration survey
Register your attendance for ELF Patient Organisation Networking Day (if you wish to attend)
30 June
Apply for a bursary 17 April Send your logo to ELF 31 July Register for additional parts of the ERS Congress (6-9 September) and paid the appropriate fee
No deadline
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Registration for patient representatives attending meetings
This section is relevant to you if you are attending meetings on behalf of ERS/ELF during the ERS Congress. This includes:
• members of ELF Patient Advisory Groups (PAGs); and • people attending Task Force, Clinical Research Collaborations (CRCs) or ERS working
group meetings.
ELF recruits patient representatives to attend meetings held during the ERS Congress for a range of ERS projects. These include meetings for Task Forces, CRCs and ERS working groups. These patient representatives, as well as PAG members who are attending meetings, are there on behalf of ELF, so we aim to cover all costs incurred.
As a patient representative attending meetings, you are entitled to: • a registration pass to attend the Congress on the day that you are attending a
meeting; • return travel costs in economy class; and • one night’s accommodation (at ELF’s discretion an additional night’s accommodation
can be paid if needed to support your involvement: for example, if your lung condition makes it too tiring to travel on the same day as the meeting).
If you decide to extend your stay to allow you to attend other parts of the ERS Congress, ELF is unable to cover the additional accommodation and living costs. However, you may be eligible for a bursary.
Once a meeting invitation has been confirmed by ELF, you will be contacted by the ERS travel agency or ELF to arrange your travel to and from the Congress. You are responsible for booking your own accommodation. We recommend that you book as early as possible because the costs will increase. ELF will reimburse you for your travel and accommodation. Please check which nights you are entitled to claim back before booking by emailing [email protected].
ELF is responsible for arranging the registration pass, which will be available to pick up onsite at the Congress.
ELF Patient Organisation Networking Day and bursaries
If you would like to attend the ELF Patient Organisation Networking Day on Saturday 5 September, please complete the following online form: Registration for ELF Patient Organisation Networking Day, Vienna 2020.
You may also be eligible to apply for a bursary. Please note that usual bursary amounts for patient representatives are €350 and €700. However, if ELF is paying for your travel and accommodation for you to attend a meeting, your bursary allowance may be lower than
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requested. You can apply for a bursary on the online form, and we will evaluate how much you are entitled to depending on your circumstances (for example, how long you are planning to be in Vienna for the Congress).
Checklist for patient representatives who are attending meetings
Deadline Tick once complete
Register your attendance for ELF Patient Organisation Networking Day (if you wish to attend)
30 June
Apply for a bursary 17 April
Further support If you would like more information about attending the Congress or have any questions about registering, please contact [email protected].
We look forward to seeing you in Vienna!
