You can't plan for things you don't see
The South African Rare Disease Patient Registry is how this community gets recognised. Before you sign up, here's exactly what it is and what you're agreeing to.
Why this matters more than it sounds
Every time we argue for better rare disease care, the first question is how many people it affects. South Africa has very little of that data, which makes it easy for decision-makers to treat this community as too small to plan for.
The registry is where that answer comes from. It is the evidence behind submissions to medical schemes, engagements with the Department of Health, and the case for rare disease being taken seriously as a national health issue. Every person who registers makes that argument harder to dismiss.
You don't need a confirmed diagnosis to join. Undiagnosed patients are the most uncounted of all, and the most important to include.
1
Create an account
You'll be taken to the registry application to register with an email address and password.​
2
Complete your profile
Your details, your condition if you have a diagnosis, and your medical history.​
3
Keep checking back
You can come back and add more whenever you like. ​Use it as an effective monitoring tool.
What to expect
The questions people usually have
Who sees my information?
The registry is confidential and secure, and you control what is shared. Data used for research and advocacy is de-identified, meaning it contributes to the numbers without identifying you.
Does this cost anything?
No. It's free, and it always will be.
What if I don't have a diagnosis?
Register anyway. Undiagnosed patients are part of the picture and the registry is built to include you.
Will I be contacted about research or trials?
Only if you choose to be. Being reachable means we can tell you about clinical trials, new treatments or research relevant to your condition, which for some families has changed things considerably.
Can I register for someone else?
Yes. Parents and caregivers can register on behalf of the person they care for, including children.
Can I change my mind?
Yes. You can update your information or withdraw at any time.