WHO WE ARE
Founded in 2013 by Kelly du Plessis, Rare Diseases South Africa is a non-profit organisation that has been successfully working to ensure that people living with a rare diseases and congenital disorders experience better recognition and support, improved health service and a better life overall.
Headquartered in Johannesburg, South Africa, RDSA has grown tremendously over the last few years not only from an industry, advocacy and patient perspective, but also from a staffing perspective - where each staff member is committed to the improvement of the healthcare system in South Africa and eager to find solutions to better meet the needs, and ensure the overall care, of South Africans impacted by a rare condition.
What started out of personal need, following the diagnosis of the founder's son, it quickly became evident that there was a lack of support and awareness on Rare Diseases in South Africa. However, since inception, RDSA have successfully launched initiatives that have impacted the lives of over 1500 patients and the team continues to engage with various governmental departments, organs of state, industry players and strategic stakeholders to raise awareness and move rare disease policy forward. In 2020, RDSA made the decision to absorb Genetic Alliance South Africa into its operations and expand our mandate to include congenital disorders.
Today, as a voice for the vulnerable communities, RDSA brings international best practice and local innovation together in terms of medical intervention and treatment, drives a collective voice for medical advancement and support and advocates the right to medical advice and assistance - playing a fundamental role in bridging the gap between vulnerable communities and medical advancement.
The organisation is currently managed on a day-to-day basis by a CEO, who is assisted by selected external consultants. The Board of Directors also include individuals representing different sectors of the economy and people impacted by rare diseases.