About Us

Rare Diseases International, RDI, is the global alliance of Persons Living with a Rare Disease (PLWRD) of all nationalities across all rare diseases.

We bring together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations and multi-stakeholder groups to create the global alliance of rare disease patients and families.

Vision, Mission & Objectives

Over 300 million persons worldwide live with a rare disease.

Rare disease patients are faced with common challenges derived from the rarity of their conditions and aggravated by the low priority given to rare diseases globally. Rare diseases are often chronic, progressive, degenerative, disabling and life-threatening.

Addressing rare diseases on an international level is critical to reducing health and social inequalities between populations worldwide and ensuring that PLWRD have access to the same resources as any other population.

We work to:

• Unite, expand and reinforce the rare disease movement of patient organisations and patient advocates
• Put rare diseases on the agenda of international organisations and multilateral institutions such as the United Nations, ECOSOC and the WHO, and on the national agenda of every country around the world
• Strengthen rare disease patient groups capacity to act at local, national, regional and global levels and to interact with other rare disease groups

RDI recognises that people living with a rare disease are facing similar challenges irrespective of where they live in the world. The over 300 million people living with one of over 6,000 known rare diseases around the world share a common interest to address their comparable or specific needs.

RDI helps ensure that persons living with a rare disease worldwide and their families experience a better life through greater recognition and support, as well as improved healthcare, social services and full inclusion in society and respect for their human rights.

RDI’s mission is to be a strong common voice for people living with a rare disease around the world.

• To promote rare diseases as an international public health, research and human rights priority through public awareness and policy-making
• To represent its members and people living with a rare disease in international institutions and forums
• To enhance the capacities of its members through information, exchange, networking, mutual support and joint actions