Rare Diseases International (RDI) is a global alliance of patient organisations and disease specific federations who represent people living with rare diseases. RDI was launched in 2015 to advocate for rare diseases as an international public health priority, to represent its members, and to enhance their capacities. The objectives of RDI are to:
- Unite, expand and reinforce the movement of people living with a rare disease to speak with one strong voice.
- Establish rare diseases as a public health priority in more countries and regions around the world as well as at the global level.
- Put rare diseases on the agenda of the United Nations and other international organisations.
- Strengthen rare disease patient groups’ capacity to act at local, national, regional and global levels.
Retina International is delighted to announce that KP Tsang has been elected to the Council of RDI. Many of our members will be familiar with KP as a member of the RI Management Committee. He is a patient advocate living with Retinitis Pigmentosa and his experience mobilising the rare disease community spans over two decades. In 1995 he founded Retina Hong Kong and in 2014 established the Hong Kong Alliance for Rare Diseases, now Rare Disease Hong Kong to identify and address the gaps in patients’ needs and existing healthcare policy as well as advocate for access to diagnosis, treatment and care for rare disease patients.
We are grateful to KP for agreeing to take on this responsibility on behalf of RI and look forward to working with him to provide you, our members, with updates on global Rare Disease Policy.
The newly appointed RDI Council is available to view here: