The Botswana Organization for Rare Diseases (BORDIS) was founded by a family whose two children have rare diseases. The challenges they faced to get a diagnosis and manage the conditions of their children inspired them to raise the voice of rare disease patients and their families in Botswana. The mission of BORDIS is to create an environment where rare disease patients thrive by building strong collaborations and networks in Botswana, as well as to provide resources and inputs to ensure access to diagnosis, right treatments for rare disease patients.
Global Genes is an US-based organization, founded in 2009 with just a few rare disease patient advocates which has now grown to a collaboration of over 500 organizations globally. Its mission is to eliminate the challenges of rare diseases by building awareness, educating the global community, and providing critical connections and resources that equip advocates to become activists for their disease. Global Genes promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon.
The Organization for Rare Diseases India (ORDI) was founded to address many challenges in the management of rare disease in India, including the lack of a national policy surrounding rare disease or orphan drug development. ORDI’s mission is to support patients’ needs by running national rare disease hotline, maintaining a website and also organizing sponsored clinics that are at no cost to the patients. Additionally, ORDI supports the development of rare disease research by providing a rare disease patient registry and biobanking facility as well as funding rare disease researchers in India.
Rare Diseases International (RDI) is a global alliance of people living with a rare disease of all nationalities across all rare diseases. It brings together has 49 member organizations which in turn represent rare disease patients in more than 100 countries. Its mission is to create a global rare disease community by uniting the rare disease movement of patient organizations, putting rare diseases on the agenda of international organizations and strengthening rare disease patient groups capacity to collaborate together as well as act at the local, national, regional and global levels.