EURORDIS Membership Meeting (EMM) 2017 Budapest
May 2017
This year, the EURORDIS Membership Meeting 2017 Budapest will take place from Friday 19 – Saturday 20 May at the Danubius Hotel Helia, Budapest.
Non-member patient organisations, researchers, healthcare professionals, academia and healthcare industry representatives are also invited to attend the EMM alongside over 200 patient advocates.
2017 marks the 20th anniversary of EURORDIS. Sessions on day one of the EMM will focus on achievements of the last two decades and on how to build on the success of 20 years of rare disease advocacy.
On day two of the EMM, attendees will participate in workshops on European Patient Advocacy Groups and European Reference Networks, alternative therapies, paramedical therapies, ”survival basics” for small patient organisations, and the topic of social revolution.
Six patient representatives will also have the opportunity to present innovative strategies, services or projects that could be useful for other patient groups in a soapbox session on Saturday. If you are interested in participating, please email anja.helm@eurordis.org.
EURORDIS thanks the AFM-Téléthon, the European Commission and more than 10 companies for their support of this event. Corporate partnerships are still available, please contact jill.bonjean@eurordis.org for more information.
Please note that the General Assembly on Friday morning is open to EURORDIS members only, all other participants are welcome to join the afternoon session from 14:30 on Friday and participate in all workshops on Saturday.
Satellite meetings
Several satellite meetings will also take place ahead of the EMM on Thursday 18 May. The Council of National Alliances will meet (CNA members only). In addition, European Patient Advocacy Group (ePAG) representatives will come together and participate in leadership training.
ePAGs bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the development of the new European Reference Networks. Elected ePAG patient representatives liaise with these organisations to ensure a true representation of the patient voice by participating in the Board and sub-clinical committees of their respective ERN. Is your patient organisation interested in joining an ePAG or would you like to become an ePAG representative? Read more.
EMM 2017 Plenary: EURORDIS 20th Anniversary
Speakers: Dorica Dan, Avril Daly & Yann Le Cam
- Building an empowered and engaged community of patient advocates, Dorica Dan, Romanian Alliance for Rare Diseases & EURORDIS, Romania
- Building an open and respected movement of patient organisations and advocates, Avril Daly, Retina International & EURORDIS, Ireland
- Building a strong European & international advocacy voice & agenda to achieve goals, Yann Le Cam, Chief Executive Officer, EURORDIS
Workshop I: European Reference Networks, Hopes & Dreams: Let’s make it happen!
Speakers: Matt Bolz-Johnson, Sofia Douzgou, Maurizio Scarpa, Luca Sangiorgi, Claudia Sproedt, Courtney Coleman, Amanda Bok & Victoria Hedley
- Introduction, Matt Bolz-Johnson, Healthcare & Research Director, EURORDIS
- Diagnosis: Rare Malformation ERN, Sofia Douzgou, Manchester Centre for Genomic Medicine
- Treatment: Rare Metabolic ERN, Maurizio Scarpa, Coordinator MetabERN
- Research: Rare Bone ERN, Luca Sangiogi, Head of Medical Genetic Department, Rizzoli Orthopaedic Institute
- Rare Renal ePAG, Claudia Sproedt, FEDERG
- Rare Lung ePAG, Courtney Coleman, European Lung Foundation
- Haematology ePAG, Amanda Bok, European Haemophilia Consortium
- The operationalisation of an ERN, Victoria Hedley, University of Newcastle, RD-Action , UK
Workshop 2: Hope & Happiness are Part of the Treatment
Speakers: François Houÿez, Tuy Nga Brignol, Rob Camp, Sieta de Vries, Yann Le Cam & Sandra Courbier
- Introduction: Reflection on NATC, François Houÿez, Treatment Information and Access Director, Health Policy Advisor, EURORDIS
- Case study: a mushroom to treat muscles? Tuy Nga Brignol, AFM-Telethon, France
- The role of the Herbal Medicinal Product Committee at the EMA, Rob Camp, DITA Task Force
- Patient questionnaires: standards and requirements, Sieta de Vries, University Groningen, The Netherlands
- The quest for a holistic approach to being well, Yann Le Cam, Chief Executive Office, EURORDIS
- Survey on complementary and alternative therapies: preliminary results, Sandra Courbier, Surveys and Social Studies Manager, EURORDIS, Rare Barometer Leader
- Trends in acupuncture publications over the past 20 years, Tuy Nga Brignol
- Another way to manage pain in neuromuscular diseases, Tuy Nga Brignol
Workshop 3: Survival Kit for Small Patient Organisations
Speakers: Claudia Crocione, Oliver Timmis, Lara Chappell & Claas Roehl
- Introduction: Patient organisation self-diagnosis, Claudia Crocione, HHT Europe
- Take a look on the inside – is it time to start up again? Case study, Claudia Crocione
- Training Volunteers, Claudia Crocione
- Turning members into active volunteers: People raising and strategies associated, Oliver Timmis, AKU Society, UK
- Hiring staff, Oliver Timmis
- Communication: creating a positive image and impact, Lara Chappell, Communications Director, EURORDIS
- Fundraising strategies, Claas Röhl, NF Kinder, Austria
Workshop 4: Social Revolution
Speakers: Ildiko Vajda, Sandra Courbier, Erwan Berjonneau, Raquel Castro, Martina Fuga & Eva Bearryman
- Introduction, Ildiko Vajda, VSOP, Netherlands
- Survey results: Juggling care and daily life, Sandra Courbier, Surveys and Social Research Manager, EURORDIS, Rare Barometer Leader
- Survey results: Impact of rare diseases on well-being and mental health, Erwan Berjonneau, Research Executive for the Rare Barometer Programme
- Survey results: The challenge of coordination of care, Raquel Castro, Social Policy Senior Manager, EURORDIS
- Survey results: The challenge of working while living with a rare disease, Sandra Courbier
- Inspirational campaigns using humour to raise awareness, Martina Fuga, CoorDown Board, delegate for communication, Italy
- Disseminating survey results on social media, Eva Bearryman, Communications Manager, EURORDIS