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
- 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 is patient-centric, patient-driven and patient-led
- RDI recognises that people living with a rare disease are facing common challenges irrespective of where they live in the world. Patients with rare diseases are all linked and most are genetically related
- Through its work, the hope is that RDI will ensure that people living with a rare disease worldwide and their families will experience better recognition and improved public health services and support
RDI aims to be a strong common voice on behalf of people living with a rare disease around the world.
- To promote rare diseases as an international public health and research priority through public awareness and policy-making
- To represent its members and people living with a rare disease at large, in international institutions and forums
- To enhance the capacities of its members through information, exchange, networking, mutual support and potentially joint actions