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Organisation
France
Non-profit sector

EURORDIS

Plateforme Maladies Rares, 96 rue Didot
75014 Paris, France

The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.EURORDIS' mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.

Plateforme Maladies Rares, 96 rue Didot

75014 Paris

France

+33156535210

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Team

Jean-marc Sfeir Account Admin

Videos (196)

European Commissioner for health Stella Kyriakades' on Europe's commitment to rare diseases 22 Mar 2021 1616432208
Terkel Andersen calls for a new European Framework for rare diseases 22 Mar 2021 1616432208
Rebecca Skarberg explains why the clock is ticking for people with rare diseases 22 Mar 2021 1616432208
The recommendations of the Rare 2030 Foresight Study - and how we got there 22 Mar 2021 1616432208
Kateřina Konečná MEP, on the role the Czech Presidency have to play in rare diseases 22 Mar 2021 1616432208
Milan Macek: "Absence of action will revert us back" 22 Mar 2021 1616432208
Cristian-Silviu Buşoi on the European Parliament's role on rare diseases 22 Mar 2021 1616432208
Yann Le Cam sets the case for a new European framework for rare diseases 22 Mar 2021 1616432208
Jan Blatný prioritises European solidarity for rare diseases 22 Mar 2021 1616432208
Andrzej Ryś, European Commission, on the Rare 2030 Recommendations 22 Mar 2021 1616432208
Rare 2030 recommendations in focus 22 Mar 2021 1616432208
Frédérique Ries, MEP, on the Rare 2030 recommendations 22 Mar 2021 1616432208
EURORDIS Black Pearl Awards 2021 - David Maria Sassoli, President of the EP, Honorary chai... 22 Mar 2021 1616432208
EURORDIS Lifetime Achievement Award 2021 - Milan Macek 22 Mar 2021 1616432208
EURORDIS Company Award for Health Technology 2021 - Epihunter 22 Mar 2021 1616432208
EURORDIS Photo Award 2021 recipients announcement 22 Mar 2021 1616432208
EURORDIS Company Award for Patient Engagement 2021 - Takeda 22 Mar 2021 1616432208
EURORDIS Company Award for Innovation 2021 - Orchard Therapeutics 22 Mar 2021 1616432208
EURORDIS European RD Leadership Award 2021 - Victoria Hedley, Dr. Enrique Terol, Dr. Birut... 22 Mar 2021 1616432208
EURORDIS Black Pearl Award 2021 - Dominique Sturz talking about Rare Disease Week 2021 22 Mar 2021 1616432208
EURORDIS Young Patient Advocate Award 2021 - Rachele Somaschini 22 Mar 2021 1616432208
EURORDIS Written Media Award 2021 - Ana Ilić 22 Mar 2021 1616432208
EURORDIS Visual and Audio Media Award 2021 - Noémie Desquiotz-Sunnen 22 Mar 2021 1616432208
EURORDIS Scientific Award 2021 - Alain Hovnanian 22 Mar 2021 1616432208
EURORDIS Policy Maker Award 2021 - Kateřina Konečná 22 Mar 2021 1616432208
EURORDIS Volunteer Award 2021 - Ingunn Westerheim and Rebecca Tvedt Skarbeg 22 Mar 2021 1616432208
Avril Daly's opening speech - EURORDIS Black Pearl Awards 2021 22 Mar 2021 1616432208
EURORDIS Member Award 2021- AKU Society 22 Mar 2021 1616432208
Impact video - Black Pearl Awards 2021 22 Mar 2021 1616432208
EURORDIS Black Pearl Awards 2021 22 Mar 2021 1616432208
Rare 2030 Final Policy Conference - Feb 23, 2021 22 Mar 2021 1616432208
Vaccination campaigns in Europe - François Houÿez 22 Mar 2021 1616432208
S.A.R. la Grande-Duchesse de Luxembourg - RARE DISEASE DAY 2021 message 22 Mar 2021 1616432208
Her Majesty Margareta of Romania Speech Rare Diseases Day 2021 22 Mar 2021 1616432208
Rare 2030 Foresight Study 22 Mar 2021 1616432208
Rare 2030 - David Maria Sassoli speech 22 Mar 2021 1616432208
"In ten years' time...": an open letter from the next generation of Rare Disease advocates 22 Mar 2021 1616432208
EURORDIS Black Pearl Awards 2021 | Sammy Basso 22 Mar 2021 1616432208
A Final Update on the Rare 2030 Foresight Study 22 Mar 2021 1616432208
EURORDIS' take on the approval and development of COVID19 vaccines 22 Mar 2021 1616432208
HTx project 2020 - European Project - Introduction 22 Mar 2021 1616432208
FROM POSSIBLE TO ACCESSIBLE? Launch event of RARE IMPACT report 22 Mar 2021 1616432208
Rare 2030 ERN event 22 Mar 2021 1616432208
Rare Barometer: How to interpret results and communicate about the COVID19 survey 22 Mar 2021 1616432208
Good Practice - ERN Skin 22 Mar 2021 1616432208
Webinar: EURORDIS Covid-19 survey – Full results and recommendations 22 Mar 2021 1616432208
Webinar: A data strategy for the European Reference Networks 22 Mar 2021 1616432208
Allison Watson on being an ePAG advocate 22 Mar 2021 1616432208
Dorica Dan on being an ePAG advocate 22 Mar 2021 1616432208
EURORDIS Black Pearl Awards 2022 | Sammy Basso 27 May 2021 1622152893
EURORDIS Webinar: Deep dive into integration of ERNs (Part I) 12 Jul 2021 1626127318
EURORDIS Webinar: #30millionreasons campaign update 21 Sep 2021 1632261702
RareConnect.org: BINGO study webinar 30 Sep 2021 1633039629
Ethical Aspects of Clinical Trials 7 Oct 2021 1633644113
Deep-dive into integration of ERNs : Care Pathways 15 Oct 2021 1634335320
EURORDIS webinar on the Rare2030 survey findings 21 Oct 2021 1634853714
Yann le Cam on the importance of ePAGs 9 Nov 2021 1636498920
Webinar: Update on the COVID-19 pandemic in Europe with special focus on PLWRD 22 Nov 2021 1637622111
Europe’s Action Plan for Rare Diseases debated in the European Parliament 8 Dec 2021 1639004519
Special message from EURORDIS Chief Executive Officer, Yann Le Cam 19 Jan 2022 1642633321
MEP David Lega 31 Jan 2022 1643670132
Francesco Cannadoro 1 Feb 2022 1643756536
Noah Higón 1 Feb 2022 1643756536
Milica & Noa 1 Feb 2022 1643756536
EURORDIS BLACK PEARL 2022 CEREMONY 10 Feb 2022 1644534111
“A Conversation with Dystonia" 10 Feb 2022 1644534111
EURORDIS Black Pearl Company Award for Patient Engagement - SMA NBS Alliance 18 Feb 2022 1645225332
EURORDIS Black Pearl Young Patient Advocate Award - Danielle Drachmann 18 Feb 2022 1645225332
EURORDIS Black Pearl Volunteer Award - Graham Slater 18 Feb 2022 1645225332
EURORDIS Black Pearl Social Media Award - Noa and Milica Savic 18 Feb 2022 1645225332
EURORDIS Black Pearl Scientific Award - Prof. Franz Schaefer 18 Feb 2022 1645225332
EURORDIS Black Pearl Policy Maker Award - Prof. Hans-Georg Eichler 18 Feb 2022 1645225332
EURORDIS Black Pearl Members Award - Childhood Cancer International Europe (CCI-E) 18 Feb 2022 1645225332
EURORDIS Black Pearl Media Award - EwenLife 18 Feb 2022 1645225332
EURORDIS Black Pearl Lifetime Achievement Award - Dr. William Gahl 18 Feb 2022 1645225332
EURORDIS Black Pearl Leadership Award - Dr. Anne-Sophie Lapointe 18 Feb 2022 1645225332
EURORDIS Black Pearl Company Award for Innovation - Lysogene 18 Feb 2022 1645225332
EURORDIS Black Pearl Company Award for Health Technology - Aparito 18 Feb 2022 1645225332
Yann Le Cam's message of solidarity with people with rare diseases living in Ukraine 3 Mar 2022 1646348526
Launch of the Rare Barometer Diagnosis Survey: strengthen your advocacy work with robust f... 21 Mar 2022 1647903721
ePAG exchange of Good Practices: Patient-clinician feedback session 30 Mar 2022 1648677731
Peer-learning pills: Development of patient reported outcome measures (PROMs) 30 Mar 2022 1648677731
ePAG Good Practices: Clinical Practice Guideline development 30 Mar 2022 1648677731
European Reference Networks and European Advocacy Patient Groups - 101 12 Apr 2022 1649800910
ePAG exchange of Good Practices: Designing Surveys 17 May 2022 1652824910
Introducing the 11th European Conference on Rare Diseases & Orphan Products 27 May 2022 1653688900
Helene Dollfus on attending ECRD2022, the largest patient-led rare disease policy event. 21 Jun 2022 1655848937
Ruediger Gatermann on attending ECRD2022, the largest patient-led rare disease policy event. 21 Jun 2022 1655848937
AMEQUIS ePAG Webinar 1 Jul 2022 1656712926
IRDiRC REACT Orphan Drug Development Guidebook 4 Jul 2022 1656972121
Open Academy - Why do you, as a patient advocate, should participate? 20 Sep 2022 1663711332
Open Academy - Why is empowering patient advocates so important? 20 Sep 2022 1663711332
Webinar: The Fundamentals of International Advocacy for Rare Diseases 22 Sep 2022 1663884134
Open Academy - "An opportunity not to be missed' by Marta Campabadal 23 Sep 2022 1663970538
ERN 5-Yr Evaluation through the Patient-Lens Webinar 29 Sep 2022 1664488937
ePAG Exchange of Good Practices _ VASCERN Flowchart 29 Sep 2022 1664488937
Improving access for rare diseases 13 Oct 2022 1665698536
Engaging with stakeholders for rare diseases 13 Oct 2022 1665698536
Empowering people with rare diseases 13 Oct 2022 1665698536
Advocating rare diseases as a public health priority 13 Oct 2022 1665698536
Patient-managed registries - Julián Isla - Open Academy 13 Oct 2022 1665698536
Connecting patients to ERN Working Group update 17 Oct 2022 1666044145
ePAG Clinical practice guidelines Working Group + AMEQUIS task force update 17 Oct 2022 1666044145
ePAG Research and Registries Working Group update 17 Oct 2022 1666044145
ePAG Training Working Group 17 Oct 2022 1666044145
Engaging stakeholders for rare diseases 18 Nov 2022 1668812541
Advocating rare diseases as a public health priority 18 Nov 2022 1668812541
Empowering people with rare diseases 21 Nov 2022 1669041335
Improving access for rare diseases 21 Nov 2022 1669071726
Terkel Andersen, Immediate Past President, on his legacy at EURORDIS 28 Nov 2022 1669676531
Avril Daly, President, on her inspiration at EURORDIS 28 Nov 2022 1669676531
Geske Wehr, General Secretary, on how open-mindedness makes for successful teams 1 Dec 2022 1669935745
Dorica Dan, Vice President, on the future of integrated care 1 Dec 2022 1669935745
Avril Daly, President, on the importance of diversity 1 Dec 2022 1669935745
Avril Daly, President, on what she hopes for her legacy at EURORDIS 1 Dec 2022 1669935745
Maria Montefusco, Vice President, on the diverse community represented by EURORDIS 1 Dec 2022 1669935745
Alain Cornet, Treasurer, on how EURORDIS can remain collected to the rare disease community 1 Dec 2022 1669935745
Simona Bellagambi, Deputy General Secretary, on building a successful and diverse team 13 Dec 2022 1670972532
Raising awareness about the needs of people with rare diseases 20 Dec 2022 1671577326
Patient Partnership Working Group meeting 21 Dec 2022 1671663727
New HTA Regulation and the new EU Cooperation on HTA 12 Jan 2023 1673564526
EURORDIS Photo Award 2023: A message from Marcus Bleasdale 18 Jan 2023 1674082934
Michelle Muscat - EURORDIS Black Pearl Awards 2023 Honorary Patron 13 Feb 2023 1676329323
MEP Tilly Metz - EURORDIS Black Pearl Awards 2023 Honorary Patron 13 Feb 2023 1676329323
Ambassador Willem van de Voorde - EURORDIS Black Pearl Awards 2023 Honorary Patron 13 Feb 2023 1676329323
Alternate Minister of Health of Greece Dr. Mina Gaga - EURORDIS Black Pearl Awards 2023 16 Feb 2023 1676588519
Minister Vandenbroucke - EURORDIS Black Pearl Awards 2023 Honorary Patron 16 Feb 2023 1676588519
Black Pearl Awards 2023 1 Mar 2023 1677711719
ePAG Exchange of Good Practices: EURO-NMD case study 29 Mar 2023 1680127321
ePAG Exchange of Good Practices: PaedCan case study 29 Mar 2023 1680127321
ePAG Exchange of Good Practices: ERNICA case study 29 Mar 2023 1680127321
ePAG Exchange of Good Practices: EpiCARE case study 29 Mar 2023 1680127321
Patient partnership webinars: EPICARE case study 4 Apr 2023 1680645719
Patient partnership webinars: ERNICA case study 4 Apr 2023 1680645719
Patient partnership webinars: EURO-NMD case study 4 Apr 2023 1680645719
Patient partnership webinars: PaedCan case study 4 Apr 2023 1680645719
Patient Representatives Involvement in the ERN Evaluation webinar (21st April 2023) 27 Apr 2023 1682632916
EURORDIS Partnership Webinars: Rare Disease National Networks & ERN National Coordination ... 5 May 2023 1683324120
Open Academy - Why you should enrol in our trainings 9 Oct 2023 1696888932
Open Academy - Why you should enrol in our trainings 9 Oct 2023 1696888932
Sharing main results and key learnings 2023 ePAG Steering Committee Annual Meeting, 13 Nov... 16 Nov 2023 1700175745
Yann Le Cam Opening remarks at ePAG Steering Committee Annual Meeting 16 Nov 2023 1700175745
MEP Tilly Metz - EURORDIS Black Pearl Awards 2024 Honorary Patron 1 Feb 2024 1706828534
Michelle Muscat - EURORDIS Black Pearl Awards 2024 Honorary Patron 1 Feb 2024 1706828534
H.E. Willem Van de Voorde - EURORDIS Black Pearl Awards 2024 Honorary Patron 20 Feb 2024 1708470132
H.E. Edita Hrdá - EURORDIS Black Pearl Awards 2024 Honorary Patron 20 Feb 2024 1708470132
13th EURORDIS Black Pearl Awards 28 Feb 2024 1709161333
MEP Brando Benifei - EURORDIS Black Pearl Awards 2024 Honorary Patron 6 Mar 2024 1709766141
Championing the Rare 7 Mar 2024 1709852536
Patient Partnership Pills: ERN NMD Rehabilitation Summer School, why is this a good practice? 14 Mar 2024 1710457340
EURORDIS Patient Partnership Webinar - Good Practices - Educational Programmes 14 Mar 2024 1710457340
Ethics and Informed Consent Meetup 14/03/24 15 Mar 2024 1710543737
OA24 MRD Webinar #2 recording 25 Mar 2024 1711407742
Patient Partnership in Healthcare Webinar - Patient Journeys 25 Mar 2024 1711407742
Access to Treatments 10 Apr 2024 1712786538
In Conversation: Virginie Bros-Facer and Avril Daly 19 Apr 2024 1713564145
In Conversation: Virginie Bros-Facer and Avril Daly 21 Apr 2024 1713736935
Rare Barometer Webinar on the results of the NBS survey 2 May 2024 1714687336
Mental Health Podcast 9 May 2024 1715292142
Highly Specialised Care Podcast 9 May 2024 1715292142
ERDERA 101 Podcast 9 May 2024 1715292142
Eurordis Wellbeing Partnership Network 13 May 2024 1715637737
Eurordis on Mental Health 13 May 2024 1715637737
Patient Partnership Webinar: Go East! Project by ERN Lung 31 May 2024 1717192947
Ayça Şahin's story and what our survey reveals about long diagnostic journeys 3 Jun 2024 1717452144
Positively styling life with lymphedema: Nicole Faccio 3 Jun 2024 1717452144
The impact of an ultra-rare condition: Fatal Familial Insomnia 3 Jun 2024 1717452144
EURACAN Registry: Developing a long-term vision together 3 Jun 2024 1717452144
Leif's story 3 Jun 2024 1717452144
It's Rare Disease Day 2024! 3 Jun 2024 1717452144
Natalia's story 3 Jun 2024 1717452144
Jay's story 3 Jun 2024 1717452144
Katie's story 3 Jun 2024 1717452144
Dan's story 3 Jun 2024 1717452144
Mental wellbeing: Hands-on support for the community 3 Jun 2024 1717452144
Deeann's story 3 Jun 2024 1717452144
Bor's story 3 Jun 2024 1717452144
Becky's story 3 Jun 2024 1717452144
Amber's story 3 Jun 2024 1717452144
Gene therapies: Promoting development and expanding access 3 Jun 2024 1717452144
Action within reach: Shaping the future at ECRD 2024 3 Jun 2024 1717452144
Giving back to the community 3 Jun 2024 1717452144
Gene therapies: Why are they important? 3 Jun 2024 1717452144
Should more diseases be screened for at birth? 3 Jun 2024 1717452144
No two are alike 3 Jun 2024 1717452144
Assessing the true value of new health technologies 3 Jun 2024 1717452144
Finding New Uses for Existing Medicines 3 Jun 2024 1717452144
Transforming Healthcare through Sharing Data 3 Jun 2024 1717452144
The effort to make rare disease medicines less rare 3 Jun 2024 1717452144
EU Action Plan 5 Jun 2024 1717624948
Simplifying access to cross-border healthcare: a Czech proposal 12 Jun 2024 1718229780
Young Advocates 25 Jun 2024 1719352952
Webinar on Approaches to Evaluate Evidence on Rare Disease Guidelines 26 Jun 2024 1719439350
Marina Zapparoli Manzoni on the power of finding and building a community 27 Jun 2024 1719525750
Patient Partnership Webinar: The Patient Experience - partnering to improve hospital services 1 Jul 2024 1719871351
Healthcare Webinar: Added Value of Patient Involvement in the Design of Care Pathways 17 Jul 2024 1721253788

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