Become a member:
We aim to bring all umbrella rare disease patient organisations in every country and all regional and international networks for every rare disease into one global community to speak with one voice. We are building the rare disease patient movement of tomorrow. Come and join us today!

Why become a member?
• Join an African community of rare disease alliances and be part of an increasingly strong voice for rare disease patients in Africa.
• Develop and advocate for common positions to influence or encourage policy that improves the lives of your members.
• Share experience and information on African policy on a dedicated online platform.
• Participate in Africa-Rare meetings
• Be listed on the Africa-Rare website with a direct link to your website

Who can become a member?
• Umbrella organisations representing several rare diseases in one country (National alliances)
• Umbrella organisations representing the same disease or family of diseases in several countries (International Federations)
• Umbrella organisations representing national alliances or other patient groups in several countries across a geographical region

Eligibility criteria
Full members
• Be a rare disease focused organisation
• Your Governing Boards should be usually made up of a majority of rare disease patients or family of patients
• Financial transparency and diversified funding showing independence and minimisation of risk of conflict of interest
• Proven activities such as patient support and/or advocacy activities and/or research.

As a general rule Africa-Rare.org will not accept membership applications from local patient groups unless there is no established National Alliance in the country they are applying from. The governing body of Africa-Rare.org will take decisions on a case-by-case basis and exceptions to the eligibility criteria can be made under special circumstances.

Associate members
Patient organisations or any other entity contributing to the objectives of Africa-Rare.org by their mission and work can apply to become an associate member.

Associate members cannot vote or be elected to the governing board of Africa-Rare.org

Terms of Referencepdfdownload