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 disease experience better recognition and support, improved health services, and a better life overall.
Headquartered in Johannesburg, South Africa, Rare Diseases South Africa has grown tremendously over the last few years not only from an industry advocacy and patient perspective, but also from a staff perspective – where each staff members 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 care of South Africans, who are suffering with 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, Rare Diseases South Africa have launched successful initiatives that have impacted the lives of over 1300 patients and the team continuously engage with various governmental departments, organs of state, industry players and strategic stakeholders to raise awareness and move rare disease policy forward.
Today, as a voice for vulnerable communities, Rare Diseases South Africa 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.
A South Africa where those impacted by Rare Diseases access life-saving treatment and supportive care for improved quality of life.
Bridging the gap to improved quality of life for those impacted by rare diseases through advocacy and empowerment.
VALUES AND PRINCIPLES
Equality, Care, Dignity and Empowerment.