DISSEMINATION STRATEGY AND COMMUNICATION PLAN

ACHIEVING COMPREHENSIVE COORDINATION ON ORGAN

DONATION THROUGHOUT THE EU

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WP2 Dissemination, D 3 Dissemination Strategy and Communication Plan

CONTENTS

1. INTRODUCTION ......................................................................................... 3

2. DISSEMINATION OBJECTIVES AND CONTENTS ...................................... 3

3. TARGET GROUPS ........................................................................................ 5

4. DISSEMINATION TOOLS ............................................................................. 6

a. Layman’s brochure ......................................................................................................... 6

b. Web dissemination ......................................................................................................... 7

c. Newsletters ...................................................................................................................... 7

d. Use of social public media ............................................................................................ 7

5. TIMELINE .................................................................................................... 10

ANNEX I. List of stakeholders ....................................................................... 11

ANNEX II. Template list of international/national congresses where

ACCORD can be disseminated ..................................................................... 25

Annex III. Policy for authorship of publications .......................................... 28

Annex IV. Evaluation of dissemination activities in progress .................... 30

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1. INTRODUCTION

The dissemination plan described below represents the strategy for the ACCORD

consortium use to communicate the outcomes of the project both during its lifetime and

at the end of its 42 months duration.

Based on previous experiences of the Work Package (WP) 2 leaders, a dual approach

is proposed. On one hand, a continuous update on the project findings and outputs

must be provided to all relevant stakeholders, involving them as much as possible in

the development of the activities as these progresses. On the other hand, some

dissemination efforts will be required after the project lifetime expiration, as major

findings and conclusive deliverables normally come in the end.

As a complementary action to the dissemination strategy, a sustainability and

implementation plan per each country to ensure the sustainability and transferability of

the Joint Action (JA) results will be also drafted, with the contribution of each

associated partner.

It is therefore worthwhile underlining that, in addition to WP2 leader and the consortium

coordinator, each partner is responsible for the dissemination of the JA at its own

country, by attending local and national conferences in order to present the project and

its results to experts in the field and by communicating the findings to the

corresponding Competent Authority and policy makers. This last involvement is also

granted by the nature of the JA itself, since partners have been identified by Member

States authorities. The aforementioned national activities are requested to be notified

to the WP2 leader - and the coordinator of the JA - so that a complete record of

national project dissemination activities can be constructed.

Dissemination will be also managed internationally, via the website (managed by the

coordinator of the JA), through the invitation of the External Advisory Board - made of

international experienced members (Francis L. Delmonico, Peter Doyle and Philippe

Morel)- to general meetings and specific teleconferences, the attendance of ACCORD

partners to international conferences and a wide distribution of the project materials, as

specified in this plan.

The present dissemination plan includes a description of the contents to disseminate,

the target groups and the tools to use for the different target groups.

2. DISSEMINATION OBJECTIVES AND CONTENTS

It is the intention of the ACCORD consortium to guarantee a proper visibility of the

findings of the three different fields covered by the JA: living donor registries,

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collaboration between Intensive Care Units and donor transplant coordinators, and

twinnings in the area of organ donation and transplantation. Clearly, only the key

outputs will be extensively disseminated via specific tools that will be designed for such

purpose. Dissemination activities will therefore focus on the following outputs:

Living donor registries:

o State of the art of living donor registries

o Definition of a minimum and expanded data set for live donor

registries

o Recommendations for the development of a national live donor

registry and for setting up a European Union (EU) registry of national

live donor registries

Intensive Care Units and Donor Transplant Coordinators collaboration:

o Study of the variations in end-of-life care pathways for patients with a

devastating brain injury in Europe

o Recommendations for systemic improvements in end-of-life care

pathways to promote organ donation

Twinning projects: France-Bulgaria (organization of the procurement system,

evaluation of activities, training surgical team for pediatric kidney

transplantation), Italy-Czech Republic/ Cyprus/Lithuania/ Malta, Netherlands-

Hungary. (Evaluation, Accreditation and Audit of Transplant Centers):

o Report on experiences with Twinning projects

o Guidelines/ twinning model for futures initiatives in the field

During, and particularly towards the end of the JA, promotional material will be

produced to highlight the main findings of the project, such as scheduled newsletters

and a final report, out of which WP2 will produce a layman version. This will be

particularly relevant to EU Member States who are not partners of the JA, such as

Austria, Slovak Republic and Denmark. The Competent Authorities for organs of such

countries will receive as well copies of the dissemination material that will be produced.

This approach will be implemented in close collaboration with the JA coordinator.

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3. TARGET GROUPS

Having identified the dissemination contents, the next priority is the identification of the

groups of users. Several different target groups can be selected:

European Commission DGs (SANCO, RESEARCH, other)

European Parliament

European Council

World Health Organization (WHO)

Council of Europe (EDQM)

National Competent Authorities and their delegated bodies, if applicable

National Transplant Organizations (if not represented above)

Supranational organ exchange organizations (Eurotransplant,

Scandiatransplant)

National and international scientific societies in the field of donation,

transplantation and intensive/emergency care

International registries managers, when relevant to the JA

In-the-field professionals (intensivists, surgeons, nephrologists, coordinators)

Patient associations

General public.

As WP2 leader, CNT-ISS has produced a list proposal and all consortium partners will

contribute in building and updating such list of stakeholders based on the

aforementioned categories. The list includes links to single websites and email

addresses for direct contact, normally referring to the corresponding general secretariat

or, if necessary, individual contact persons. The template list of stakeholders divided by

groups is attached as Annex I. This list will be regularly updated and will be part, in its

final version, of the sustainability and implementation plan.

Given the relevance of this JA in the organ transplantation field, it has been decided to

involve as many stakeholders, interest groups and experts as possible. This will be

done in a number of ways, such as by:

Updating all interested parties on the project’s progress through different means

as specified here after;

Presenting the project objectives and the major results obtained so far at several

international meetings of regulators, scientific societies and of other European

projects.

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Dissemination activities aiming at the general public will also be designed and carried

out from the onset of the JA. Given the nature of ACCORD, the information to be

shared with the general public will be considerably different as to what will be provided

to in-the-field professional operators. Tools identified for the general public target group

will be mainly the website, the layman brochure and the layman version of the final

report. In order to curb costs, both brochure and report for the general public will be

produced in a limited number of paper copies but also in electronic version, unloadable

on the JA website, national websites and possibly disseminated through the other

identified tools. For press conferences organized at any event, the special

dissemination needs of the general public will be given due consideration. Finally, a link

with international organizations, such as the WHO and the Council of Europe - EDQM

will also be established to ensure that the results of the project are made available to

countries outside the European Union.

4. DISSEMINATION TOOLS

a. Layman’s brochure

Addressees to all target groups.

In line with the requirements for JAs funded by the Public Health Programme,

the ACCORD consortium will produce a “layman brochure” addressed to all the

target groups, including the general public at the beginning of the action. This

dissemination material is meant to include a general description of the project

goals, aimed at informing the public of the project existence and the planned

activities and at drawing attention on the implementation of such action.

CNT as WP2 leader will propose a draft brochure that will be first agreed upon

with the project coordinator (ONT) and then circulated within the consortium for

comments and approval. One thousand copies will be printed and the brochure

will be published as downloadable electronic file in the public part of the

website. Each associated and collaborating partner will receive a certain

number of copies to ensure dissemination in all participating countries. While no

budget was allocated in the agreement for paying for dissemination booths or

for travel to congresses, in its function of WP2 leader, CNT will distribute the

brochure during some selected international events, first of all at the Competent

Authorities meetings organized by the European Commission.

In the brochure, all the associated and collaborating partner organizations will

be listed. A short description of the project and its main goals will open the

document. In a second part, the specific objectives of the project will be

analyzed more in depth: living donor registries, collaboration between intensive

care and donor transplant coordinators, and twinnings on organ donation and

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transplantation. All the rules about publicity statements foreseen in the contract

will be honored.

For the final dissemination event, planned to be held in April 2015 in Madrid, it

is also envisaged to produce a short info leaflet, addressed to the general public

and the media.

Still for this same event the layman version of the final report will be produced

at month 36, in the form of a more comprehensive information brochure with a

full overview of the project outcomes and results. Such layman report will also

be uploaded in electronic form in the public part of website and printed in 1.000

copies.

b. Web dissemination

Addressees to all target groups.

CNT will cooperate with ONT in updating the public area of the ACCORD website.

General information will be agreed upon by a small editorial group, composed by

the project leader and the dissemination WP2 leader. ONT will manage practically

the uploading of materials on the website such as publications or events (inputs

from all partners will be required). Specific information on the core WPs will be

provided by each core WP leader.

Final reports foreseen by the JA will be distributed to target audiences (Project

Committee, Collaborating Partners, EAHC and target groups) as foreseen in the

Technical Annex (p. 39 of Grant Agreement). The opportunity of uploading

information on all public events and public deliverables on EAHC website giving

communication to each-communication@ec-europa.eu will also be fully exploited.

c. Newsletters

Addressees to competent authorities, scientific societies and professionals.

CNT will prepare two newsletters to be disseminated among stakeholders. These

newsletters will be produced at months 18 and 32, in 400 copies plus e-version.

Electronic files will be sent out by email to the list of relevant stakeholders.

d. Use of social public media

Addressees to all target groups.

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In order to increase the dissemination opportunities, the ACCORD consortium will

take advantage of the available public spaces. Since it is often the case that it is

difficult for the coordinator to keep on maintaining a dedicated website after the

expiration of projects or actions, public tools such as wiki pages are planned to be

used. A wiki page on the ACCORD JA will therefore be written and uploaded, and

inserted in Wikipedia in English. This will allow having permanent trace of the JA

main outcomes. ACCORD partners will also have the opportunity to translate the

page and publish it in their native language Wiki pages, if willing to do so.

Moreover, if some video materials become available for dissemination or

educational purposes during the JA, uploading on website or other public space will

be considered.

a. International congresses – oral presentations and/or organization of aimed

initiatives (addressees: SCIENTIFIC SOCIETIES, PROFESSIONALS)

List of events and international congresses where dissemination actions can be

taken will be produced in agreement with the consortium- see template in Annex II.

Each country will be asked to provide a list of National Congresses or events where

they plan to disseminate nationally the results of the JA in 2013, 2014 and 2015.

Such information will be asked at the beginning of the JA and again in early 2014

and 2015. The final version of such list will be part of the sustainability and

implementation plan.

As far as for oral and poster communications are concerned, upon initiative of the

coordinator or WP leaders and with the consent of the consortium majority,

abstracts will be submitted to relevant congresses or events.

b. Preparation of presentations for official EU meetings (addressees:

COMPETENT AUTHORITIES, POLICY MAKERS).

When requested to give presentations on ACCORD during official EU meetings,

such as EAHC workshops, EU Commission Organ Competent Authorities meetings

Council of Europe CD-P-TO meetings or, EU Parliament events, the consortium will

support DG SANCO or the organization in charge of delivering the presentation

during the meeting in preparing an update on the results of the JA. To this end, a

standard updatable presentation will be prepared as basis for these presentations

and each WP leader will be asked to provide the requested information. All

presentations will be uploaded as pdf in the private section of the ACCORD

website.

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c. Papers for international and national scientific and professional journals

(addressees: PROFESSIONALS)

During the lifetime of the JA, the consortium or each single partner is invited to write

and submit for publication articles that summarize the outputs of the JA. All such

articles shall follow the EAHC publicity rules as foreseen in Article I.11.3 and II.5.1

of the Grant Agreement and some internal rules as reported in Annex III.

d. Press releases (addressees: JOURNALISTS and MASS MEDIA)

Press releases related to the work of the JA will be prepared in agreement with

ONT and assistance will be supplied upon request to consortium members when

needed.

e. Sustainability and implementation plan (addressees: DG SANCO, EAHC)

As foreseen by the technical Annex to the Grant Agreement, a sustainability and

implementation plan of dissemination initiatives will be delivered at month 34.

Contributions from all associated partners will be collected to this purpose and the

final version of stakeholders and events lists will be part of this. The drafting of this

document will start at month 30. This deliverable will also contain a summary of the

dissemination initiatives taken by the consortium during the JA lifetime. To this

purpose and for the sake of the evaluation of ACCORD, a form for keeping due

record of participation to events or other dissemination initiatives has been

prepared by WP3 coordinator and will be used to monitor the progress of

dissemination activities as part of the Evaluation WP (Annex IV).

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5. TIMELINE

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ANNEX I. List of stakeholders

Nº COUNTRY ORGANIZATION ABREVIATION/E-MAIL WEBSITE

1 SPAIN

Organización Nacional de Trasplantes ONT

www.ont.es

Beatriz Domínguez-Gil bdominguez@msssi.es

Rosario Marazuela rmarazuela@msssi.es

Lola Perojo mperojo@msssi.es

Cristina Vázquez de Prada cristina.vazquez@atos.net

2 ITALIA

Centro Nazionali Trapianti ISS-CNT

www.trapianti.salute.gov.it Alessandro Nanni Costa cnt.segreteriadirezione@iss.it

Paola di Ciaccio paola.diciaccio@iss.it

3 NETHERLANDS

Nederlandse Transplantatie Stichting (Dutch Transplantation Foundation)

DTF

www.transplantatiestichting.nl

Bernadette Haase b.haase@transplantatiestichting.nl

Andries Hoitsma aj.hoitsma@transplantatiestichting.nl

Cynthia Konijn c.konijn@transplantatiestichting.nl

Loes van Ingen Schenau j.vaningenschenau@transplantatiestichting.nl

Mike van den Bosch m.vandenbosch@transplantatiestichting.nl

Jeannette de Graauw j.degraauw@transplantatiestichting.nl

Nichon Jansen n.jansen@transplantatiestichting.nl

Kirsten Ooms-de Vries k.ooms@transplantatiestichting.nl

Jeanet Warmerdam j.warmerdam@transplantatiestichting.nl

4 UK

Department of Health - Organ and Tissue Transplantation – NHS

NHSBT

www.nhsbt.nhs.uk

Mark Roberts Mark.Roberts@nhsbt.nhs.uk

Chris Rudge cjrudge@btinternet.com

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Paul Murphy Paul.Murphy@nhsbt.nhs.uk

Claire Williment Claire.Williment@nhsbt.nhs.uk

Karen Quinn Karen.Quinn@nhsbt.nhs.uk

5 FRANCE

Agence de la biomédecine ABM www.agence-biomedecine.fr

Candide Font-Sala candide.font-sala@biomedecine.fr

Arnaud De Guerra Arnaud.deguerra@biomedecine.fr

6 BULGARIA

Bulgarian Executive Transplant Agency BEAT

www.mh.government.bg

Silvi Kirilov iat@bgtransplant.bg

Dimitar Pehlivanov dpehlivanov@bgtransplant.bg;

Maria Gicheva m.gicheva@abv.bg

Delilah Mihaylova dilaila.mihailova@gmail.com

7 CROATIA

Ministry of Health Republic of Croatia/ Institute for Transplantation and Biomedicine

MOH

www.zdravlje.hr

Mirela Busic Mirela.Busic@miz.hr

Branka Malnar-Grubisic Branka.Malnar-Grubisic@miz.hr

8 CYPRUS

Ministry of Health

www.moh.gov.cy

Panayiotis Hadjicostas phrp1960@cytanet.com.cy;

prhadjicostas@cytanet.com.cy

9 CZECH REPUBLIC

Czech Transplantation Coordination Center

KST

www.kst.cz Pavel Březovský brezovsky@kst.cz

Premysl Fryda fryda@kst.cz

10 ESTONIA

Permanent Representation of Estonia to the EU / Tartu University Hospital

TUH

www.kliinikum.ee/eng

Virge Pall virge.pall@kliinikum.ee

Peeter Dmitriev Peeter.Dmitriev@kliinikum.ee

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Mart Einasto Mart.Einasto@kliinikum.ee

11 GERMANY

DEUTSCHE STIFTUNG ORGANTRANSPLANTATION

DSO

www.dso.de Guenter Kirste Guenter.Kirste@dso.de

Thomas Breidenbach Thomas.Breidenbach@dso.de

Detlef Bösebeck Detlef.Boesebeck@dso.de

12 GREECE

Hellenic Transplant Organisation HTO

www.eom.gr Georgia Menoudakou gmenoudakou@eom.gr

Efi Nikolaou thalia@eom.gr

13 HUNGARY

Hungarian National Blood Transfusion Service, Hungarian Transplantation Society

HNBTS

www.ovsz.hu/en

Sándor Mihály mihaly.sandor@ovsz.hu

Orsolya Deme deme.orsolya@ovsz.hu

14 IRELAND

Health Service Executive HSE

www.hse.ie/eng

Matthew Collins Matthew_Collins@health.gov.ie

Siobhan O'Sullivan Siobhan_O'Sullivan@health.gov.ie

Maeve Raeside Maeve.Raeside@hse.ie

Mary Jackson Mary_Jackson@health.gov.ie

15 LATVIA

Pauls Stradins Clinical University Hospital

www.stradini.lv

Liga Grudule liga.grudule@stradini.lv

Silvija Pablaka Silvija.Pablaka@vm.gov.lv

Eva Steina evasteina@inbox.lv

Rafail Rozental rafail.rozental@transplantation.lv

16 LITHUANIA

National Transplant Bureau NTB

www.transplantacija.lt Asta Kubilienė asta.kubilienė@transplantacija.lt

info@transplantacija.lt

Audronė Būziuvienė audrone.buziuviene@transplantacija.lt

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17 MALTA

DG Health Care Services within the Ministry for Health, the Elderly and Community Care

MHEC

https://ehealth.gov.mt/HealthPortal Carmel Abela carmel.c.abela@gov.mt

Paul Calleja paul.calleja@gov.mt

Joseph Zarb Adami joseph.zarb-adami@gov.mt

18 NORWAY

The Norwegian Directorate of Health HDIR

www.regjeringen.no

Per Fauchald p.fauchald@c2i.net

Jorunn Svendsen Jorunn.Svendsen@helsedir.no

19 POLAND

Poltransplant POLTRANSPLANT

www.poltransplant.org.pl

Jaroslaw Czerwiński jew@poltransplant.org.pl;

jczerwinski@poltransplant.pl

20 PORTUGAL

Instituto Português do Sangue e da Transplantação

ISPT

www.asst.min-saude.pt

Catarina Bolotinha catarinabolotinha@gmail.com;

catarina.bolotinha@ipst.min-saude.pt

21 ROMANIA

National Transplant Agency ANT

www.romtransplant.ro

Dan Adrian Luscalov aluscalov@yahoo.com

Victor Zota victor.zota@transplant.ro;

victorzota@gmail.com

Rosana Turcu rosana.turcu@gmail.com

22 SLOVENIA

SLOVENIJA TRANSPLANT SLOVENIJA TRANSPLANT

www.slovenija-transplant.si Danica Avsec danica.avsec@slovenija-transplant.si

Lea Lampret lea.lampret@slovenija-transplant.si

23 SWEDEN National Board of Health and Welfare SoS

www.socialstyrelsen.se/english

Charlotte Möller Charlotte.Moller@socialstyrelsen.se

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Nº COLLABORATING PARTNERS

CONTACT PERSON E-MAIL

1 EUROPEAN HOSPITAL AND HEALTHCARE FEDERATION (HOPE)

Pascal Garel sg@hope.be www.hope.be

2 EUROPEAN SOCIETY OF INTENSIVE CARE MEDICINE (ESICM)

Giuseppe Citerio gciterio@gmail.com www.esicm.org

Paulo Maia paulo_azevedo_maia@net.sapo.pt

3 EUROTRANSPLANT Axel Rahmel a.rahmel@eurotransplant.org www.eurotransplant.org

Marieke van Meel m.vanmeel@eurotransplant.org

4 SCANDIATRANSPLANT Niels Grunnet nielgrun@rm.dk www.scandiatransplant.org

5

European Transplant Coordinators Organizations-European Donation Committee (ETCO-EDC) a section of ESOT

Teresa Pont tpont@vhebron.net www.etco.org

6 WORLD HEALTH ORGANISATION Luc Nöel noell@who.int www.who.org

7

EUROPEAN DIRECTORATE FOR THE QUALITY OF MEDICINES AND HEALTH CARE - COUNCIL OF EUROPE

Marta López Fraga marta.FRAGA@edqm.eu

www.edqm.eu Karl-Heinz Buchheit Karl.BUCHHEIT@edqm.eu

8 HOSPITAL CLÍNIC DE BARCELONA - SPAIN Martí Manyalich MMANYA@clinic.ub.es www.hospitalclinic.org

9 ORGANISATION DES ETABLISSEMENTS DE SOINS - BELGIUM

Isabelle Van Der Brempt isabelle.VanDerBrempt@health.fg

ov.be http://www.health.belgium.be/eportal/Aboutus/ourorganisation/DGforHealthCare

FacilitiesOrgan/?fodnlang=fr Isabelle Senepart Isabelle.Senepart@health.fgov.be

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Nº EU CAs (not involved in ACCORD)

CONTACT PERSON E-MAIL

1 Bundesministerium für Gesundheit – Federal Ministry of Health - Austria Bernhard Fattinger Bernhard.fattinger@bmg.gv.at www.gesundheitsministerium.at

2

Transplantacne addolenie Fakultna nemocnica - Department of transplantation University Hospital – Republic of Slovakia

Luboslav Bena luboslav.bena@gmail.com www.azet.sk

3 Sundhedsstyrelsen - Danish Health and Medicines Authority Bjorn Ursin Knudsen bjk@sst.dk www.laegemiddelstyrelsen.dk

SCIENTIFIC SOCIETIES WEB CONTACT PERSON E-MAIL

AUSTRIAN TRANSPLANTATION SOCIETY www.austrotransplant.at Rainer Oberbauer Rainer.Oberbauer@meduniwien.ac.at

ÖSTERREICHISCHE GESELLSCHAFT FÜR NEPHROLOGIE http://www.nephro.at

DEUTSCHE TRANSPLANTATIONSGESELLSCHAFT www.d-t-g-online.de

dtg.sekretariat@klinik.uni-regensburg.de

BELGISCHE TRANSPLANTATIE VERENIGING www.transplant.be

info@transplant.be

NEDERLANDSE TRANSPLANTATIE VERENINGING (NTV) www.transplantatievereniging.nl

secretariaat@transplantatievereniging.nl

DANISH TRANSPLANTATION SOCIETY www.organtransplantatation.dk sss@rh.dk;

dts@organtransplantation.dk

BRITISH TRANSPLANTATION SOCIETY (BTS) www.bts.org.uk

secretariat@bts.org.uk

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SOCIETA ITALIANA TRAPIANTI DI ORGANO (SITO) www.societaitalianatrapiantidiorgano.com

info@societaitalianatrapiantidiorgano.com

EURO LIVER FOUNDATION www.transplantations.com dominique.gonze@clin.ucl.ac.be

SOCIETA' ITALIANA DI NEFROLOGIA (SIN) www.sin-italy.org

nefrologia@sin-italy.org

SOCIEDADE PORTUGUESA DE TRANSPLANTAÇÃO (SPT) www.spt.pt

secretariado@spt.pt

AMERICAN SOCIETY OF TRANSPLANTATION (AST) www.a-s-t.org

info@a-s-t.org

INTERNATIONAL SOCIETY FOR HEART AND LUNG TRANSPLANTATION (ISHLT)

www.ishlt.org

ishlt@ishlt.org

INTERNATIONAL TRANSPLANT COORDINATORS SOCIETY (ITCS) http://med.kuleuven.be/itcs/home.html

itcs@online.be; info@donoraction.org

INTERNATIONAL SOCIETY OF NEPHROLOGY (ISN) http://www.nature.com/isn/index.html

info@isn-online.org;

SOCIEDAD LATINO AMERICANA Y DEL CARIBE DE TRASPLANTE (STALYC) www.congreso.sociedaddetrasplante.cl

trasplante_dr@hotmail.com

THE MIDDLE EAST SOCIETY FOR ORGAN TRANSPLANTATION www.mesot-tx.org

secretary@mesot-tx.org; mesot@mesot-tx.org

THE TRANSPLANTATION SOCIETY (TTS) www.transplantation-soc.org

info@tts.org

THE TRANSPLANTATION SOCIETY OF AUSTRALIA AND NEW ZEALAND www.tsanz.com.au

tsanz@racp.edu.au

CANADIAN SOCIETY OF TRANSPLANTATION www.cst-transplant.ca

cst@rcpsc.edu

THE JAPAN SOCIETY FOR TRANSPLANTATION www.asas.or.jp/jst

ishoku@asas.or.jp

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THE MALAYSIAN TRANSPLANTATION SOCIETY www.mst.org.my/main.html

mst@acrm.org.my

SOCIEDAD ESPAÑOLA DE TRASPLANTE www.setrasplante.org Manuel Arias Rodríguez info@setrasplante.org

SOCIEDAD ESPAÑOLA DE CARDIOLOGÍA www.secardiologia.es Carlos Macaya Miguel slegendre@secardiologia.es

SOCIEDAD ESPAÑOLA DE NEFROLOGÍA www.senefro.org Alberto Martínez Castelao jlgorriz@senefro.org

SOCIEDAD ESPAÑOLA DE NEUMOLOGÍA Y CIRUGÍA TORÁCICA www.separ.es Angel Salvatierra secretaria@separ.es

SOCIEDAD ESPAÑOLA DE MEDICINA INTENSIVA, CRÍTICA Y UNIDADES CORONARIAS

www.semicyuc.org José Cuñat de la Hoz

SOCIEDAD ESPAÑOLA DE MEDICINA DE URGENCIAS Y EMERGENCIAS www.semes.org Tomás Toranzo Cepeda semes@semes.org

SOCIEDAD ESPAÑOLA DE TRASPLANTE HEPÁTICO www.sethepatico.org Manuel de la Mata García

SOCIEDAD ANDALUZA DE TRASPLANTES www.satot.org

Dolores Burgos

Rodríguez rbelinchon@atlanta.es

SOCIETAT CATALANA DE TRASPLANTAMENT www.fctransplant.org

Josep Mª Campistol i

Plana congress@aopc.es

SOCIEDAD MADRILEÑA DE TRASPLANTES www.smtrasplantes.org

José María Morales

Cerdán secretaria@smtrasplantes.org

SOCIEDAD ESPAÑOLA DE NEFROLOGIA www.senefro.org

SOCIEDADE PORTUGUESA DE CUIDADOS INTENSIVOS www.spci.pt Paul Maia Paulo_acevedo_maia@net.sapo.pt

SOCIEDADE PORTUGUESA DE www.spt.pt Fernando Macário secretariado@spt.pt

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TRANSPLANTAÇÃO direccao@spt.pt

TURKISH TRANSPLANTATION SOCIETY www.tond.org.tr

INTERNATIONAL PAEDIATRIC TRANSPLANT ASSOCIATION www.iptaonline.org info@IPTAonline.org

INTERNATIONAL LIVER TRANSPLANTATION SOCIETY www.ilts.org

HUNGARIAN TRANSPLANTATION SOCIETY www.transzplant.hu

SOCIETE FRANÇAISE DE NEPHROLOGIE www.soc-nephrologie.org Maurice Laville maurice.laville@chu-lyon.fr

SOCIETE FRANÇAISE D'ANESTHESIE ET DE REANIMATION www.sfar.org/t/ contact@sfar.org

SOCIETE FRANCOPHONE DE TRANSPLANTATION www.transplantation-francophone.org/

secretariat@transplantation-francophone.org

ACADEMIE NATIONALE DE CHIRURGIE http://www.bium.univ-paris5.fr/acad-chirurgie/ ac.chirurgie@bhdc.jussieu.fr

SOCIETE FRANCOPHONE DU DIABETE http://www.sfdiabete.org/ secretariat@sfdiabete.org

ASSOCIATION FRANÇAISE D'UROLOGIE http://www.urofrance.org/ delegation.generale@afu.fr

ASSOCIATION FRANÇAISE POUR L'ETUDE DU FOIE http://www.afef.asso.fr/ afef@afef.asso.fr

SOCIETE FRANÇAISE DE CHIRURGIE THORACIQUE ET CARDIO-VASCULAIRE

http://www.sfctcv.net sfctcv@sfctcv.net

SOCIETE DE PNEUMOLOGIE DE LANGUE FRANÇAISE http://www.splf.org/ SPLF@splf.org

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SOCIETE DE REANIMATION DE LANGUE FRANÇAISE http://www.srlf.org/ Djillali Annane

chantal.sevens@srlf.org; djillali.annane@rpc.aphp.fr

SOCIETE FRANÇAISE DE CARDIOLOGIE http://www.sfcardio.fr contact@cardio-sfc.org

ASSOCIATION FRANCOPHONE DES INFIRMIERS DE DIALYSE ET TRANSPLANTATION EN NEPHROLOGIE

http://www.afidtn.com contact@afidtn.com

ASSOCIATION DE CHIRURGIE HEPATO-BILIAIRE ET DE TRANSPLANTATION HEPATIQUE

http://www.chirurgie-viscerale.org Denis Castaing denis.castaing@pbr.ap-hop-paris.fr

afc10@wanadoo.fr

SOCIETE FRANÇAISE DE CHIRURGIE DIGESTIVE http://www.chirurgie-viscerale.org Loïc de Calan decalan@med.univ.tours.fr

SOCIETE FRANÇAISE DE CHIRURGIE PEDIATRIQUE http://www.chirpediatric.fr

http://www.chirpediatric.fr/formulairecontact.html

SOCIETE DE NEPHROLOGIE PEDIATRIQUE http://www.soc-nephrologie.org Patrick Niaudet niaudet@necker.fr

SOCIETE FRANÇAISE DE MEDECINE D'URGENCE (SFMU) www.sfmu.org Denis Baron dbaron@chu-nantes.fr

ASSOCIATION DES MEDECINS URGENTISTES DE FRANCE (AMUF) www.amuf.fr

secretariat@amuf.fr

EUROPEAN DIALYSIS & TRANSPLANTATION ASSOCIATION/EUROPEAN RENAL ASSOCIATION (EDTA/ERA)

http://www.era-edta.org

secretary@elita.org

EUROPEAN LIVER TRANSPLANT REGISTRY www.eltr.org Renè Adam Rene.adam@pbr.aphp.fr

COLLABORATIVE TRANSPLANT STUDY www.ctstransplant.org Gerard Opelz support@ctstransplant.org

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LATVIJAS TRANSPLANTACIJAS CENTRS LATVIAN TRANSPLANTATION CENTER

info@transplantation.lv

LATVIJAS TRANSPLANTOLOGU ASOCIACIJA ASSOCIATION OF TRANSPLANTOLOGIST IN LATVIA

Jānis Jušinskis

Jānis Bicāns jushinskis@transplantation.lv

janis.bicans@transplantation.lv

SABIEDRISKA BEZPELNAS ORGANIZACIJA BALTTRANSPLANT ASSOCIATION BALTTRANSPLANT

Sergey Trushkov sergejs@transplantation.lv

PATIENT ASSOCIATIONS WEB CONTACT PERSON E-MAIL

Bulgarian Liver Transplanted Association

Danish Kidney Transplantation www.nyreforeningen.dk

Irish Heart and Lung Transplant Association www.ihlta.com

Irish Kidney Association - Dublin www.ika.ie

ACTI - Associazione CardioTrapiantati Italiani www.acti-italia.it

AITF - Associazione Italiana Trapiantati di Fegato www.aitf.org aitfnazionale@libero.it

ANED - Associazione Nazionale EmoDializzati www.aned-onlus.it segreteria@aned-onlus.it

LIVER-POOL - Federazione nazionale associazioni di volontariato malattie epatiche e trapianto

www.liver-pool.org liver-pool@excite.it

info@afmf.it

Norwegian Organ Donation Foundation www.organdonasjon.no Hege Lundin Kuhle post@organdonasjon.no

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Norwegian Association for Kidney and Transplant Patients www.lnt.no Kolbjørn Breivik kolbjornbreivik@yahoo.no

Norwegian Association for Heart and Lung Transplant Patients Øivind Iversen oe-ivers@online.no

The Swedish Association for Kidney Patients www.drustvo-transplant.si info@http.si

European Dialysis and Transplantation Nurses Association (EDTNA/ERCA) www.edtnaerca.org queries@edtnaerca.org

Welsh Kidney Patients' Association UK www.wkpa.org.uk

European Heart and Lung Transplant Federation (EHLTF) www.ehltf.info

terrymangan@gmail.com; arnulf.pohl@aon.at

Fédération Nationale d’Aide aux Insuffisants Rénaux www.fnair.asso.fr

fnair.presidence@fnair.asso.fr fnair@fnair.asso.fr

Fondation Greffe de vie www.greffedevie.fr contact@greffedevie.fr

France Adot www.france-adot.org/ franceadot@wanadoo.fr

Association des Greffés du Cœur et des Poumons du Sud-Ouest (A.G.C.P.S.O) http://agcpso.fr/ Dominique Hermoso dominique.hermoso@orange.fr

Association départementale pour le don d’organes et de tissus humains (ADDOTH)

http://www.addoth.com/ addoth@hotmail.fr

Association Française de Malades et Opérés Cardio-vasculaires (AFDOC nationale)

www.asso-afdoc.fr/ afdocnationale@sfr.fr

Association de Lutte contre l’Insuffisance Rénale Chronique et pour la promotion du Don d’Organes en Corse (AIRCDOC)

http://rene.sialelli.perso.neuf.fr/index.html association.aircdoc@wanadoo.fr

Coordination des Associations Militant pour la Greffe et le don d'Organes en

amigo-bretagne.org/ amigo.bretagne@wanadoo.fr

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Bretagne (AMIGO Bretagne)

Association Marine "dons d'organes dons de vies" www.marine-dons-organes.org/ Dominique Jacquot contact@marine-jacquot.org

Association Morgan - Vivre grâce à la greffe www.associationmorgan.com/ vivre.morgan@wanadoo.fr

Coordination des transplantés d'Alsace-Lorraine (COTRAL) http://www.cotral.org/sommaire.htm Don.organe@orange.fr

Comité des Transplantés de Lorraine (COTRALOR) Alain Walter asuperwalter@aol.com

Donneurs de vie www.donneursdevie.fr/

Jean-Pierre Leroux jeanpierrelx@free.fr

Fédération Française des Associations des Greffés du Cœur et des Poumons (FFAGCP)

www.france-coeur-poumon.asso.fr/ ffagcp@numericable.fr

Les transplantés sportifs des Olonnes " REVIVRE par le sport " Jean-Claude Le Bourhis jeanclaudelebourhis@orange.fr

Maryse ! pour la vie www.maryse-pourlavie.com/ mplv@laposte.net

Renaloo www.renaloo.com/

contact@renaloo.fr

http://www.renaloo.com/contactpage

TRANS-FORME (Association Fédérative Française des Sportifs Transplantés et Dialysés)

www.trans-forme.org/ Claude Barres info@trans-forme.org

Transhepate - Association des déficients et transplantés hépatiques

http://www.transhepate.org/wordpress/

André Le Tutour transhepat@aol.com

Dutch Kidney Foundation www.nierstichting.nl

Dutch Kidney Patient Association www.nvn.nl/

Coalition for Health www.koaliceprozdravi.cz Jana Petrenko info@koaliceprozdravi.cz

Latvijas Nieru slimnieku asociācija lnsa@niere.lv

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Latvian Association of Kidney Patients

ASOCIACION ESPAÑOLA DE TRASPLANTADOS

www.somospacientes.com/asociacion-espanola-de-trasplantados/

Juan Pedro Baños aetrasplantados@hotmail.com

FEDERACIÓN NACIONAL DE ENFERMOS Y TRASPLANTADOS HEPÁTICOS - FNETH

www.fneth.org/ Antonio Bernal Jiménez fneth@fneth.org

FEDERACION ESPAÑOLA DE TRASPLANTADOS DE CORAZON Y PULMÓN- FETCO

www.fetco.es/web/ Emilio Bautista Soto presidencia@fetco.es

FEDERACIÓN NACIONAL DE ASOCIACIONES PARA LA LUCHA CONTRA LAS ENFERMEDADES DEL RIÑÓN - ALCER

www.alcer.org/es/ Alejandro Toledo

Noguera federacion@alcer.org

ASOCIACIÓN DE TRASPLANTADOS DE PÁNCREAS – ATP http://atp-pancreas.blogspot.com.es/

Alejandro Toledo

Noguera astxpancreas@gmail.com

Croatian Transplant Association www.transplant.hr Tanja Watz transplant@transplant.hr

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ANNEX II. Template list of international/national congresses where ACCORD can be disseminated

INTERNATIONAL CONGRESSES 2012 2013 2014 Eurotransplant Meeting Leiden, NL, October 11-12 Leiden, NL, October 10-

11

Leiden, NL, October ?

Eurotransplant Winter Meeting

Alpbach, A, January 23-

25

Alpbach, A, January

ELPAT meeting Rotterdam, April 20-23 ISHLT annual meeting 33

rd, Montreal, April 24-27 34

th San Diego, USA, 9 –

12 April ETCO ESOT Vienna, A, 8-11

September

IPITA congress Monterey, USA, Sept 25-27

ERA-EDTA Istanbul, TR, 18-21 May ?, ? May European Society of Intensive Care Medicine

Paris, Oct 5-9

European Donation Day October October ISDOP Organ donation congress Sydney, Nov 21-24

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COUTRY NATIONAL CONGRESSES 2012 2013 2014

SPAIN

XLII Congreso Nacional de la Sociedad Española de Nefrología

Maspalomas, Gran Canaria, Oct 6-12

LIV Reunión Nacional de la SETH-XXVIII Congreso Nacional de la SETH

Salamanca, Oct 18- 20

SEC 2012 - Congreso de la Sociedad Española de Cardiología 2012

Sevilla, Oct 18- 20

12 Congreso Sociedad Catalana de Trasplantament

Barcelona, March 13-15

SETH 2013 – Sociedad Española de Trasplante Hepático

Córdoba, Oct 2-4

ITALY

SISQT - Italian Society for Safety and Quality in organ Transplantation

4th congress - May

SIIARTI - Italian Intensive Care Society Naples, Oct 24-27 67

th national congress ,

October

SIN - Italian Society of Nephrology Milan, Oct 3-6 53rd congress – Milan, 3-6 October

SITO (Italian Society for organ transplantation)

Turin, Oct 18-20 37th congress - October

NETHERLANDS NTV – Dutch Transplant Society 25

th congress - Nijmegen

March 13-14 26

th congress – Leiden

March UK

FRANCE

National days of MDs, Coordinators and Nurses

22-23 November

12th Congress of the Francophone Society for Transplantation

12-15 December

Francophone Society of Intensivists

16-18 January, Paris

Days of the Agence de la biomédecine 30-31 of May, Paris Days of Transplantation Paris

BULGARIA CROATIA CYPRUS

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CZECH REPUBLIC

Czech Transplant Society and Slovak Transplant Society

4th Joint Czecho-Slovak Transplant Congress, Donovaly, SK, Sept 13-15

ESTONIA GERMANY GREECE

HUNGARY Hungarian Transplant Society XV Congress - November

IRELAND

LATVIA

LITHUANIA

European donation day October October October World donation day November November November Conference of nephrologists and patient organization

- March March

MALTA

NORWAY National Meeting for Organ Donation Responsible Doctors and Nurses

March, Oslo

POLAND PORTUGAL ROMANIA SLOVENIA SWEDEN

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Annex III. Policy for authorship of publications

The group should be willing to produce some publications with the both scientific or

non-scientific findings of the project. Without prejudice to the Article I.11.31 and II.5.12

of the Grant Agreement all the consortium should also apply some internal rules.

When the action is generating “foreground” (i.e. results, including information, materials

and knowledge generated in the action), such foreground is owned by the participant

generating it. When foreground is generated jointly, it will be jointly owned. Therefore if

a publication arises from action foreground, the following procedure for including

authors will be applied:

I. In case of national or international publications, at least one person per partner

organization involved in the WP that produced the paper should be mentioned

as an author; it is up to the partner organization to indicate its authors;

II. In case of local publications, such as short article published on an annual report,

newspaper of patient’s associations, presentations in national conferences or

any announcement written in sections devoted to the dissemination of

international projects on the national website, , the partner in charge of the

dissemination activity will appear as author, signing on behalf of the consortium.

The project can be mentioned at national and international level through presentations,

posters, and other useful means:

I. If one partner would like to produce one article or presentation fully dedicated to

the project, this should be agreed in advance by the consortium;

II. If a simple mention of the project within other contents is foreseen, there will be

no need of agreement beforehand.

If requested, an editorial group will be set up for the submission of papers. The article

shall be however approved by the consortium.

In any case the Italian National Transplant Center as leader of the dissemination work-

package shall be always informed of any dissemination activity of the project at

1 ARTICLE I.11.3 - Without prejudice to the Article II.5.1, unless the Executive Agency requests or agrees

otherwise, all communications or publications by the beneficiaries collectively or one of the beneficiary individually, which are related to the action, including conferences, seminars, videos, electronic communications or printed matter shall include the following statement: “This [insert appropriate description, e.g. publication, conference, etc.] arises from the project [insert project title] which has received funding from the European Union, in the framework of the Health Programme.”

2 ARTICLE II.5.1 – Unless the Executive Agency requests otherwise, any communication or publication by

the beneficiaries collectively or any one of the beneficiaries individually about the action, including at a conference or seminar, shall indicate that the action has received funding from the Union. Any communication or publication by the beneficiaries collectively or any one of the beneficiaries individually, in any form and medium, shall indicate that the sole responsibility lies with the author and that the Executive Agency is not responsible for any use that may be made of the information contained therein.

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national or international level, so that each initiative could be traced and receive the

right visibility as well. For this purpose CNT shall always receive a copy of the paper for

the Joint Action records. The same applies to ONT as coordinator of ACCORD.

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Annex IV. Evaluation of dissemination activities in progress

Template for collecting information on the communication and dissemination activities developed by JA partners

Partner/Organisation:………………………………………………………………………………………………………………………………………………

Country: …………………………………………City……………………………………………………………………………………………………………...

Table 1: Activities performed for the dissemination of the knowledge acquired in ACCORD JA

Actual

Dates

Type of Communication action: (institutional/academic contact, scientific paper

or poster, scientific congress, workshops, web sites, conferences, seminars,

information sent by email, press, tv, radio, leaflet, Facebook, twitter, etc…)

Type of

audience

Countries

addressed

Size of

audience

Partner

responsible

/involved

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Actual

Dates

Type of Communication action: (institutional/academic contact, scientific paper

or poster, scientific congress, workshops, web sites, conferences, seminars,

information sent by email, press, tv, radio, leaflet, Facebook, twitter, etc…)

Type of

audience

Countries

addressed

Size of

audience

Partner

responsible

/involved

Table 2: Some relevant abstracts & conferences generated and performed related to ACCORD JA

Activity/

Product Aim of the activity Place Target audience/public Date Impact

Do not forget to attach all graphic/audio-visual material used or shown in mass media or Internet. Do not forget to include the ACCORD and EAHC logos in all

the communication and dissemination activities