Eurordis - Rare Disease Europe

The Network of Parliamentary Advocates for Rare Diseases is an informal group of European and national members of parliament advocating for the improvement of the lives of people living with rare diseases. 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.

Why a Network of Parliamentary Advocates 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 in support of rare diseases and orphan medicines have been driven for the most part by the EU institutions. However, despite advances over the years, many major challenges remain today for European citizens living with a rare disease. The network of Parliamentary Advocates for Rare Diseases will help tackle these challenges by fostering cross-border EU collaboration.

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 Julie Pernet, EU Public Affairs Senior Manager (julie.pernet@eurordis.org), who can provide you with the information and materials you need to reach out to your MP or MEP.

“Rare diseases represent an area where European action brings true added value, and the most effective strategies are cross-border and EU-wide.

It is time to reshape our approach to health. Europe has the opportunity to develop a new framework based on a modern and global approach to innovation for unmet medical needs and on sustainability for healthcare systems.“

Frédérique Ries (MEP, Renew Europe, BE) is a co-chair of the network of Parliamentary Advocates for Rare Diseases

A Track Record for Rare Disease Policy at the EU Level

The 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.

Challenges for European Citizens Living with Rare Diseases

However, despite the progress made, there is still a lot more to do to ensure equitable access to appropriate medicines, health, and holistic social care for the 30 million Europeans living with a rare disease. These challenges raise important questions about 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.

Rare diseases represent much more than the commonly discussed topic of orphan medicines and their impact on health budgets; in fact, they pose challenges in all areas of life for the entire lifespan of a person. Therefore, they need to be viewed in a more holistic manner in order to break the isolation experienced by patients themselves and their families. A European coordinated approach is the right way to tackle the challenges.

Françoise Grossetête (MEP 1994-2019, EPP, FR) is a former member of the network of Parliamentary Advocates for Rare Diseases

The Network’s Commitment to a New EU Policy Framework

With this Network, MEPs commit to bringing about a new EU policy framework on rare diseases and stronger EU-wide action in health, research, social affairs, and other relevant policies. Through the Rare 2030 Foresight Study (led by EURORDIS and partners) and the Network of Parliamentary Advocates for Rare Diseases, next steps will be taken to bring into place a much-needed EU policy framework for rare diseases.

Become a Rare Disease Champion and join the Network !

By joining the network, MEPs and MPs will:

• Receive evidence-based information and expertise on the needs of their constituents living with a rare disease to contribute to legislative and policy files
• Connect with patient representatives in their constituency through EURORDIS’ network of 1000+ national patient organisations
• Share information and best practices with an active group of colleagues committed to making a difference for people living with a rare disease
• Become a rare disease champion and mobilise decision-makers to achieve key policy changes improving the lives of people with a rare disease.

If you are interested in joining, please email Julie Pernet at julie.pernet@eurordis.org

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