Rare today. Recognised tomorrow.
RDSA exists to improve the lives of South Africa's rare disease community through navigation, engagement and advocacy. In practice that means a helpline that answers, a community that holds, and a seat at the tables where decisions get made.
Advocate
Helping the collective
Individual cases show us the patterns. Advocacy is where we take those patterns to policymakers, medical schemes and regulators, and push for the systemic change no single family could win alone.
Navigate
Helping the individual
Patient navigation is our core service. One person who knows the system, walks alongside a family through diagnosis, treatment access and medical aid claims, and stays with them. Over 20,000 cases supported to date.
Engage
Helping the community
Rare is isolating by definition. We connect families to each other through support groups, Patient Voices ambassadors and community events, so no one has to be the only person they know with their condition.
What we've built
2013. Founded as a voluntary association. 2016. Registered as an NPC. 2020. Absorbed Genetic Alliance South Africa, expanding our mandate to include congenital disorders. 2026. Kick started the Rare Disease action plan for South Africa to feed into the WHO Global Action Plan for Rare Diseases.
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What started as a support group for rare disease patients has grown into South Africa's leading rare disease advocacy organisation. Over 10,000 cases supported through patient navigation. South Africa's first Rare Disease Patient Registry. A national network of support groups, run by patients for patients.
We know the journey because we're still living it.
My son was eleven months old when he was diagnosed with Pompe disease. It's a rare neuromuscular condition, and it's fatal if it isn't treated. At the time, the treatment he needed wasn't available in South Africa at all.
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What I remember most isn't the diagnosis. It's how alone we were with it. Nobody to call who understood. No clear next step. No sense that anyone in the system knew what to do with us.
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I started advocating because there was no other option. Rare Diseases South Africa grew out of that, and then out of every other family who called with a version of the same story.
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I'm still a parent in this community, not just someone running an organisation for it. We should have had somewhere to call. That's what RDSA was built to be.
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~ Kelly du Plessis, Founder and CEO
Alongside RDSA, I serve on a multitude of boards and commitees. It's personal, not organisational, but it means the local work stays connected to the global conversation.
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Rare Diseases International - Council member / secretariat
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IRDiRC - Chair of the Patient Advocacy Constituency Committee
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African Rare Disease Alliance - Founding member
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Council for Medical Schemes - PMB Review Committee
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Council for Medical Schemes - Clinical Advisory Commitee
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National Department of Health - Ministerial Advisory Committee - HTA