Eurordis

Introduction

EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. It was founded in 1997 and is supported by its members, the European Commission, the French Muscular Dystrophy Association (AFM Téléthon), corporate foundations and the health industry.

EURORDIS represents more than 500 rare disease organisations in 48 different countries (24 EU Member States) and indirectly represents more than 700 additional organisations members of national alliances or European federations of rare disease patients.  EURORDIS covers more than 4000 distinct rare diseases. It is the voice of 30 million patients in Europe. EURORDIS is a not-for-profit organisation with financial transparency and sound governance. Its headquarters are in Paris and it has a permanent representation in Brussels.

Mission

To build a strong pan-European community of patient organisations and people living with rare diseases. To be their voice at the European level and to fight against the impact of rare diseases on their lives.

Actions

• Advocate for policies that address the needs of patients and their families within the European Commission and other European institutions
• Conduct surveys and manage projects that aim at giving patients a voice in the healthcare policy that affects them
• Promote and maintain rare diseases as a priority in EU research policy and funding schemes
• Promote the development of orphan drugs and access to treatments through our involvement in orphan drugs, paediatric and advanced therapies scientific committees of the European Medicines Agency (EMA) and the training of patient representatives in the drug development and regulatory process
• Inform, educate and create awareness in national and international institutions and within public opinion
• Support the creation and development of rare disease national alliances and disease-specific European federations and networks
• Facilitate the networking of rare disease Help Lines, Respite Care Services and Therapeutic Recreation Programmes across Europe
• Create and maintain online patient communities to exchange information on specific diseases (RareConnect)
• Organise and coordinate Rare Disease Day at the international level
• Organisation of the most influential Conference on rare diseases in Europe (ECRD)

Achievements

• Contribution to the adoption of the EU Regulation on Orphan Medicinal Products in 1999
• Contribution to the adoption of the EU Regulation on Paediatric Drugs in 2006
• Contribution to the adoption of the EU Regulation on Advanced Therapy Medicinal Products in 2007
• Contribution to the adoption of the EU Commission Communication on Rare Diseases in 2008
• Contribution to the adoption of the EU Council Recommendation on European Action  for Rare Diseases in 2009
• Contribution to the promotion and maintenance of rare diseases as:
• EU Public Health Policy priority
• EU Research Framework Programme priority
• Promotion of National Plans and Strategies  on Rare Diseases in all 27 EU Member States and other European countries
• Contribution to the designation of over 1000 orphan drugs
• Organisation of the European Conferences on Rare Diseases and Orphan Products (ECRD)
• Organisation of the International Rare Disease Day