08.00-9.00 RegistRation

9.00-11.00 geneRal assembly: business agenda

• Annual Report & Financial Report & Auditors Report 2013• Action Plan & Budget 2014• Election of Directors• Volunteers in EURORDIS

11.30-13.00 leaRning fRom each otheR sessions: meet, leaRn, discuss (4 parallel sessions)

These sessions are designed to offer patient advocates an opportunity to meet, discuss and learn from each other. one key presentation is followed by sharing of experience of all participants and discussion on how to move forward. a rapporteur will summarise the debates in each workshop.

Crowd funding Room JadeModerator: Rania von der Ropp, ACHSE, Germany Key speaker: Nick Sireau, AKU Society, UK Rapporteur: Mirjam Mann, ACHSE, Germany

Education & Employment initiatives Room Spahir 3Moderator: Raquel Castro, EURORDISKey speaker: Alba Ancochea Díaz, FEDER, SpainRapporteur: Dorica Dan, Romanian Alliance for Rare Diseases & EURORDIS, Romania

Surveys: an advocacy tool? Room Saphir 2Moderator: Yann Le Cam, Chief Executive Officer, EURORDISKey speaker: Anna Kole, EURORDISRapporteur: Christine Mundlos, ACHSE, Germany

RareConnect Room Saphir 1Moderator: Rob Pleticha, EURORDISKey speaker: Denis Costello, EURORDISRapporteur: Richard West, Behçet Syndrome Society, UK

13.00-14.30 lunch

14.30-17.30 Patient advocates caPacity building WoRkshoPs (4 parallel sessions)

Workshop Patient Involvement in Best practice Guidelines Development: Improving Rare Disease Care Room Saphir 2Moderator: John Dart, Debra International, UK & EURORDIS

• Presentation of the importance of European Best Practice Guidelines: RARE-Bestpractices Project and the involvement of EURORDIS, Juliette senecat, euRoRdis

• Patients as guideline developers and users: a RARE-Bestpractices consultation session, cristina morciano and Paola laricchiuta, istituto superiore di sanità, italy

• Case study: Guidelines for Epidermolysis bullosa, dr avril kennan, debra ireland • Case study: Guidelines for Myeloma, Myeloma Patients Europe, eric low, uk• Breakout sessions: identifying obstacles and ways to involve patients in guidelines

development

Workshop Getting your views on ethical, legal and social issues in research Room Saphir 1Moderator: Anne-Sophie Lapointe, Vaincre les Maladies Lysosomales, France & EURORDIS

• Presentation of the main outcomes of Registries patient survey/book, anna kole, euRoRdis

• The bigger picture: combining genetic data with clinical data – the example of RD-Connect, Justin Paschall, The embl-european bioinformatics institute, cambridge, uk

• Identifying ethical, legal and social issues in data integration and sharing, simon Woods, Peals (Policy, ethics & life sciences) Research centre, newcastle university, uk

• Gathering the patient’s view: focus groups, Pauline mccormack, Peals (Policy, ethics & life sciences) Research centre, newcastle university, uk

Workshop Patient advocacy to improve access to Orphan Medicinal Products Room JadeModerator: Andreas Reiman, Mukoviszidose eV, Germany

• Overview of EURORDIS advocacy proposals to develop more Rare Disease therapies and improve patient’s access, yann le cam, euRoRdis

• Overview of what is changing on HTA in Europe for Rare Diseases and EURORDIS advocacy messages, françois houÿez, euRoRdis

• Potential and limits of patient progressive access/adaptive licensing applied to Rare Diseases, Pauline evers, ema, committee for orphan medicinal Products, uk

• A Patient’s Perspective on the new Cystic Fibrosis Drug Kalydec, katie murphy, cystic fibrosis association of ireland

Workshop Integration of Rare Diseases into social policies Room Saphir 3Moderator: Dorica Dan, Romanian Alliance for Rare Diseases & EURORDIS

i. Capacity building on training for social services providers:• What to consider when implementing Rare Disease training programmes for social

services providers? Raquel castro, euRoRdis• Essential training tools: Orphanet Encyclopaedia on Disability & Orphanet Disability

Project - Indexing the functional consequences of RDs with the International Classification of Functioning, Disability and Health (ICF), myriam de chalendar, orphanet, france

• Case study: Training programmes for professionals working with People Living with Rare Diseases (PLWRD), lisen mohr, frambu, norway

ii. Identifying social challenges for people living with a rare disease: discussion of the EURORDIS draft position paper.

18.00-19.00 Patient gRouPs Welcome RecePtion

PaRIS OffICEEURORDIS

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75014 Paris - FranceTel: +33 (0) 1 56 53 52 10

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BRuSSElS OffICEEURORDIS

Avenue Louise 149/241050 Brussels - Belgium

Tel: + 32 (0) 2 535 75 26

BaRCElOna OffICEc/o Fundació Dr. Robert

UAB Casa ConvalescenciaSt.Antoni Maria Claret, 171

08041 Barcelona - Spain

www.eurordis.org