Rare Diseases South Africa, formerly the Rare Disease Society of South Africa, was founded in 2013 by Kelly du Plessis. Founded out of personal need after the diagnosis of Kelly’ son, it quickly became evident that there was a lack of support and awareness on rare diseases in South Africa. RDSSA was established as a voluntary association of persons, and registered with Department of Social Development (NPO 120-991). The intention of this association was to be a support group for rare disease patients, and governed by the founding constitution.
In its short lifespan, RDSSA went through phenomenal growth, with an ever-increasing patient base. In 2016, the decision was made to change the name from Rare Disease Society of South Africa to Rare Diseases South Africa, and to amend the voluntary association of persons to a registered NPC.
The Board of Directors include individuals representing different sectors of the economy and people impacted by rare diseases. The organisation is currently managed on a day-to-day basis by a CEO, who is assisted by selected external consultants.
In keeping with the reasons for establishing Rare Diseases South Africa, we have set out the following:
VISION: A South Africa where those impacted by Rare Diseases access life-saving treatment and supportive care for improved quality of life.
MISSION: To advocate and facilitate engagement between those with the ability to prevent, intervene, treat and provide supportive care for those impacted by rare diseases.
VALUES AND PRINCIPLES: Equality, Care, Dignity and Empowerment.