You don't have to
figure it out alone

Rare Diseases are complicated.

Getting help and support shouldn't be.

Get support

For patients, families and caregivers.

Navigate

Helping the individual. One-on-one support through diagnosis, treatment access and daily life.

Engage

Helping the community. Connecting families, support groups and the people who understand

Advocate

Helping the collective. Changing policy, access and recognition at a national level.

1 in 15

South Africans will be affected by a rare disease in their lifetime. Individually each condition is rare. Together, they are common.

RDSA has made sure no one faces this journey alone since 2013.

Most patients are not officially counted anywhere.

Join the patient registry and help us change that.

What do you need?

Support for patients, caregivers and support groups, from your first questions onwards.

Find support

Real stories from our community

Untangling the Maze: Our Contribution to the latest Aspire4Rare Diagnosis Report

Written by Kelly du Plessis, CEO, Rare Diseases South Africa For every person living with a rare disease, diagnosis is rarely a single moment. It is a journey, often years long, through misdiagnoses, dead ends, and a healthcare system that was not designed with rare conditions in mind. We call it the diagnostic odyssey, and it is one of the areas where I have spent much of my advocacy career trying to make a difference. That is why I was honoured to serve on the expert panel

Knowing Your CODE: Why ICD Codes Matter More Than You Think

By Kelly du Plessis, CEO, Rare Diseases South Africa If you live with a rare disease, or care for someone who does, you have probably had this experience: a claim comes back unpaid, a benefit is paid from the wrong pool, or a life-saving treatment suddenly needs authorisation you didn't know was required. Nine times out of ten, the explanation traces back to three or four characters on a form that most patients never learn to read: the ICD code. It sounds like small print. It

Three Million Reasons South Africa Needs a Rare Disease Policy

By Kelly du Plessis, Founder & CEO, Rare Diseases South Africa For thirteen years, I have watched South African families walk the same lonely road: a child who isn't developing quite right, a specialist out of ideas, a referral letter that goes nowhere, years, sometimes a decade, before anyone can put a name to what's wrong. We at Rare Diseases South Africa (RDSA) have always known this journey is common. What we haven't had, until now, is a number. We have one now. And it's

No one should have to face this journey alone.

RDSA exists to improve the lives of our 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 about rare disease care get made.

About RDSA

Support, information, and people
who understand.

Every rare disease is different. What it takes to face one isn't.

Your donation keeps that in place for the families who need it.

Donate

Stay in the loop

Join our email list and stay informed.

You don't have to figure it out alone