European Organisation for Rare Diseases

European Organisation for Rare Diseases (EURORDIS) is a non-governmental, patient-driven alliance of patient organizations and individuals active in the field of rare diseases in Europe. It was founded in 1997 with the aim to improve the quality of life of all people living with rare diseases in Europe. EURORDIS plays a critical role in advocating for rare diseases to be recognized as a public health priority, facilitating research and development, improving access to treatment and care, and providing information and support to patients and their families.

Mission and Objectives

The primary mission of EURORDIS is to build a strong pan-European community of patient organizations and individuals living with rare diseases, thereby strengthening their voice and advocating on their behalf. The objectives of EURORDIS include:

• Promoting awareness and understanding of rare diseases among the general public, policymakers, and healthcare professionals.
• Advocating for the implementation of national and European policies and strategies for rare diseases.
• Supporting the development of safe and effective treatments and facilitating access to them.
• Encouraging and facilitating research on rare diseases.
• Providing services, information, and support to rare disease patients and their families.

Activities and Programs

EURORDIS undertakes a wide range of activities and programs to achieve its objectives, including:

• Rare Disease Day: An annual event coordinated by EURORDIS to raise awareness of rare diseases on a global scale.
• European Conference on Rare Diseases & Orphan Products (ECRD): A biennial conference that brings together stakeholders from various sectors to discuss challenges and opportunities in the field of rare diseases.
• EURORDIS-Rare Diseases Europe Patient Registry: A platform that collects and shares data on rare diseases to support research and improve patient care.
• Training programs for patient advocates: These programs aim to empower patients and patient representatives to effectively advocate for their rights and needs.

Membership

EURORDIS represents more than 900 patient organizations in over 70 countries, making it the largest network of rare disease patient organizations worldwide. Membership is open to all non-profit patient organizations that are active in the field of rare diseases, regardless of their size or the rarity of the condition they represent.

Impact

Through its advocacy and programs, EURORDIS has significantly contributed to the advancement of rare disease policies and initiatives at both the European and international levels. Its efforts have led to the adoption of the EU Regulation on Orphan Medicinal Products, the establishment of the European Reference Networks (ERNs) for rare diseases, and the inclusion of rare diseases in key EU health and research programs.

Challenges

Despite its achievements, EURORDIS and the rare disease community face ongoing challenges, including limited public and professional awareness of rare diseases, disparities in access to diagnosis, treatment, and care across Europe, and the need for more research and development of orphan drugs.

Conclusion

EURORDIS plays a pivotal role in the fight against rare diseases in Europe, advocating for the needs of patients and their families, and working towards a future where all people living with a rare disease can lead better and more fulfilling lives.

NIH genetic and rare disease info

• NIH info on European Organisation for Rare Diseases

European Organisation for Rare Diseases is a rare disease.