Launch event of Parliamentary Advocates for Rare Diseases

On 17 October 2017, EURORDIS launched the Parliamentary Advocates for Rare Diseases, a network of European and national members of parliament advocating to improve the lives of people living with a rare disease.

The network launched at the event ‘Juggling Care and Daily Life: The Balancing Act of the Rare Diseases Community’ held at the European Parliament in Brussels, during which participants heard from patient representatives on the reality of living with a rare disease.

The event was held under the patronage of MEP Françoise Grossetête, herself a Parliamentary Advocate for Rare Diseases, and with the participation of MEPs Kateřina Konečná, Marek Plura, Frédérique Ries, Christel Schaldemose and Bart Staes. Martin Seychell, Deputy Director-General DG SANTE of the European Commission, also spoke at the launch event.

See the event agenda and #ParliamentAdvocate4Rare.

Documents from launch event


parliamentary advocates for rare diseases launch event report
Report on the launch event


Presentation of the main results of the Rare Barometer Voices survey carried out under the INNOVCare Project (Avril Daly, Vice-President of EURORDIS-Rare Diseases Europe)

Infographic on key results of the Rare Barometer Voices survey on juggling care and daily life

EURORDIS' answer to the European Commission Consultation on the European Pillar of Social Rights

European Commission Expert Group on Rare Diseases' Recommendations to support the incorporation of rare diseases into social services and policies

          o A list of all other European Commission Expert Group on Rare Diseases Recommendations is available here.



link to Flickr album

Page created: 25/10/2017
Page last updated: 05/12/2017
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases