The Network of Parliamentary Advocates for Rare Diseases

Inside EU ParliamentThe Network of Parliamentary Advocates for Rare Diseases is a group of European and national members of parliament advocating to improve the lives of people living with a rare disease.

The Network aims to inform members of parliament on how they can work together with EURORDIS and the rare disease community, and how they can show their support for the rare disease community. Many of the members of the Network also supported the EURORDIS 2019 pre-election #Pledge4RD.

The role of the European Union for rare diseases

The European Union (EU) enables the rare disease community to create the critical mass of patients, experts, knowledge, guidelines and resources needed by coordinating and adding value to national efforts. Rare diseases are an area with high European added value, where coordinated European action has borne fruit. Europe has a strong track record of achievements since the first European legislative text concerning rare diseases – the Regulation of 1999 on Orphan Medicinal Products and the subsequent Commission Communication (2008) and Council Recommendation (2009), not to mention the Directive on Patients’ Rights in Cross Border Healthcare (2011) – including national plans for rare diseases, investment in research, development of treatments and the establishment of European Reference Networks.

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 EU could do to generate further progress or to eradicate inequalities in research, access to medicines, health and social care between and within Member States.

 

 

 

 

 

EURORDIS Reframe Rare Policy Event 2020, European Parliament,
© European Union 2020 – EP/photographer

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 of Parliamentary Advocates for Rare Diseases, EURORDIS- Rare Diseases Europe 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.

How can you get involved?

Are you a policy-maker at regional, nation, or EU level? Read our concept note to see ideas of concrete initiatives that you can support EURORDIS with and to learn more about the benefits network members will receive from joining the Network. Contact the EURORDIS team (below) to join the Network!

Are you a patient representative? Get in touch with us for information on how to reach out to your parliamentary representatives to encourage them to join the Network.

• Valentina Bottarelli, Head of European & International Advocacy valentina.bottarelli@eurordis.org
• Kostas Aligiannis, Public Affairs Manager kostas.aligiannis@eurordis.org

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

 

Page created: 10/10/2017
Page last updated: 17/03/2020
 
 
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