New network of Parliamentary Advocates for Rare Diseases

Parliamentary Advocates for Rare Diseases

Next Tuesday, EURORDIS will launch 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.

Through the network, EURORDIS aims to bring together members of parliament to ensure strong international and local action, shape political input for current and future legislation, and integrate rare diseases into all relevant policies at all levels.

During the launch event ‘Juggling Care and Daily Life: The Balancing Act of the Rare Diseases Community’ held at the European Parliament in Brussels, participants will hear from patient representatives on the reality of living with a rare disease, as well as from MEP Françoise Grossetête, herself a Parliamentary Advocate for Rare Diseases and patron of the event, and Martin Seychell, Deputy Director-General DG SANTE of the European Commission.

Follow the launch event on social media via #ParliamentAdvocate4Rare.

The launch event includes a presentation of highlights of the results of the first European survey on the impact of rare diseases on daily life, as carried out through Rare Barometer Voices, the EURORDIS survey initiative.

Why a network of Parliamentary Advocates for Rare Diseases?

Over the last 20 years, efforts to create breakthrough legislation in support of rare diseases and orphan medicines have been mainly driven by the EU institutions. However, despite advances over the years, many major challenges remain today for European citizens living with a rare disease.

These challenges raise important questions as to what more the European Union could do to generate further progress or to eradicate inequalities in research, access to medicines, and health and social care between and within Member States.

The network of Parliamentary Advocates for Rare Diseases will help tackle these challenges by fostering cross-border EU collaboration. Read more about the missions of the network.

Encourage your representative to become a Parliamentary Advocate for Rare Diseases

If you would like to encourage your local MP or MEP to become a member of the network of Parliamentary Advocates for Rare Diseases please contact Clara Hervas, Public Affairs Junior Manager (, who can provide you with the information and materials you need to reach out to your MP or MEP.

You can also read the concept paper to find out more about the opportunities that network members will benefit from by becoming a Parliamentary Advocate for Rare Diseases.

Eva Bearryman, Communications Manager, EURORDIS

Page created: 11/10/2017
Page last updated: 19/03/2020
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