Rare Diseases International

Rare Diseases International

Rare Diseases International (RDI) is a EURORDIS initiative that brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations, to create the global alliance of rare disease patients and families. Its mission is to be a strong global voice to advocate for rare diseases as an international public health priority through public awareness and policy, to represent its members and people living with rare diseases internationally and to enhance the capacities of its members.

Vision, mission & objectives

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, and life-threatening. They are disabling: the quality of life of patients is often compromised by the lack or loss of autonomy. Most rare diseases are genetic and affect children.

Inability to obtain an accurate diagnosis, lack of treatments and care are challenges faced by rare disease patients everywhere, and these difficulties are greater in many developing nations. Addressing rare diseases on an international level is critical to reduce health inequalities between populations worldwide and ensure that people living with a rare disease have access to the same resources as any other population.

Today, most international rare disease initiatives are ad hoc and linked to a particular disease. People living with a rare disease need to join together in a structured fashion, to create a global rare disease community and voice through advocacy and exchange of experience.

To this end, RDI aims to:

Unite, expand and reinforce the rare disease movement of patient organisations and patient advocates.

For more information on RDI, please visit the website by clicking here.