Parliamentary Advocates for Rare Diseases

Inside EU ParliamentIn 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 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. 

Read a report on the launch event, view presentation slides and see a selection of photos from the day.

The role of the European Union for rare diseases

Rare diseases as a public health issue, and the very notion of rarity, have long justified an approach that goes beyond national borders. Over the last 20 years, efforts to create breakthrough legislation and policy in support of rare diseases and orphan medicines have been driven for the most part by the EU institutions.

The EU Regulation on orphan medicinal products, the Council Recommendation on action in the field of rare diseases and the European Reference Networks demonstrate the added-value a European approach can bring to improving the lives of the people living with a rare disease in Europe.

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, health and social care between and within Member States.

Why a network of elected advocates?

The network of Parliamentary Advocates for Rare Diseases will help tackle these challenges by fostering cross-border EU collaboration. The network is made up of MEPs and national MPs who have long supported the cause of rare diseases or who have an interest in areas relevant to rare diseases (public health, social affairs, research and innovation). EURORDIS manages the day-to-day secretariat of the network.

The network’s missions are:

  • To explore and discuss specific challenges faced by people living with a rare disease and ensure stronger EU-wide action through targeted support;
  • To shape political input for future legislation and programmes, ensuring that rare diseases are made an integral part of EU, national and regional programmes in health, research, socia
  • l affairs and other relevant policies.eurordis leaflet

Through the network, EURORDIS aims to bring together members of the European and national parliaments 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.

To learn more about the network of Parliamentary Advocates for Rare Disease read the concept paper (right).

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 the EURORDIS team.

 They will provide you with the information and materials you need to reach out to your MP or MEP:

To find out what opportunities network members will benefit from read the concept paper.

 

Page created: 10/10/2017
Page last updated: 05/03/2018
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare 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