Join us.

There's a place here for patients, families, support groups, healthcare professionals and organisations. Tell us which you are and we'll ask the right questions.

I'm looking for support and community.

Joining as a patients

Membership is free, and it connects you to a community that gets it, a navigator you can call when you're stuck, and the resources to make things a bit easier.

We ask for a bit more than most forms: your address is for your welcome pack, your condition helps us place you in the right community, and your doctor and next of kin are there in case we're ever concerned about you. Anything optional can be left blank.

You don't need a diagnosis to join.

Takes about five minutes.

Join as a patient

Register a support group

We work alongside condition-specific communities across South Africa rather than duplicating what you're already doing. Registering connects your group to resources, to the wider rare community, and to the advocacy work that affects your members.

Support group membership is tiered, and we'll come back to you with which tier fits and what it includes. This form tells us who you are, who you represent, and what would be most useful from us.

Takes about three minutes.

Joining as a caregiver

Membership is free, and caregivers are members in their own right, not an extension of the person you care for. You can call us about your own situation, not only theirs.

We ask about both of you: your details so we know how to reach you, and theirs so we can place you in the right community and send your welcome pack. Your doctor and next of kin are there in case we're ever concerned.

Takes about five minutes.

Join as a caregiver

Applying to be a Patient Voices Ambassador

Ambassadors are the people who hold our condition communities together. You'd lead a support group, welcome new families, raise awareness for your condition, and tell us what your community needs so it shapes our advocacy.

This application asks more of you than our other forms, deliberately. Ambassadors represent RDSA publicly and people come to you at difficult moments. You don't need a professional background, public speaking experience or qualifications, just lived experience and a willingness to be the person others can reach. We'll train and support you.

Takes about twenty minutes. If you're shortlisted we'll be in touch for a conversation.

Submit your application

Looking to partner

Healthcare professional

ou may see one rare disease case in a career, or one a week. Either way you shouldn't have to work it out alone. Joining gives you referral pathways, patient resources you can hand over in a consult, clinical guidelines, and a point of contact when a case needs more than a prescription.

It's free to access, because a patient shouldn't miss out on a referral over a subscription. We do ask HCPs who find this useful to support the work with a voluntary annual contribution, which funds the navigators who take on the cases you refer to us.

Takes about two minutes.

Send your application

Rare Disease Partnership Programme

A structured forum for pharmaceutical, biotech, medical device and related companies to support the rare disease cause in South Africa and understand what matters to the people living with these conditions. Biannual roundtables, quarterly one-on-ones, and acknowledgement in our annual report.

Every member signs a code of conduct first. It states plainly that participation has no influence on RDSA's advocacy positions or the decisions our representatives make. That independence protects both of us: our community needs to know our positions are our own, and you need a forum you can join without compliance risk.

This is an expression of interest. We'll come back to you with the code of conduct, the current annual contribution and the next roundtable date.

Submit your application

Corporate membership

Formal annual membership for laboratories, research institutions, healthcare companies and non-profits working in and around rare disease. It gives you a listing and referrals, profiling of your services, access to our networks, and a place in the collective voice we take to medical schemes, regulators and government.

This is an enquiry rather than a sign-up. Fees are scaled to annual turnover, so what a small laboratory pays isn't what a multinational pays. Tell us about your organisation and we'll come back with your fee and what's included.

Takes about three minutes.

Send your application

Researchers

Low prevalence, scattered populations and thin registries make rare disease research difficult everywhere, and harder in South Africa. We hold the connection to the community that makes some of it possible: the South African Rare Disease Patient Registry, study recruitment, and patient involvement in study design.

Tell us about your study or project and we'll come back to you on whether and how we can help. Data access is granted under ethics approval and appropriate governance, so it's worth talking to us early rather than once a protocol is fixed.

Takes about three minutes.

Submit your application

Looking to help

Becoming a charity champion

Champions raise funds and awareness in their own communities, in their own way. A birthday instead of presents, a work collection, a school civvies day, a bake sale, a book club. Whatever fits your life.

Tell us what you're thinking, even roughly, and we'll send you a fundraising pack, set up a GivenGain page so you're not chasing anyone for cash, and give you a real person to ask. No minimum and no target: a R500 birthday fundraiser is still worth having.

Takes about two minutes.

Send your application

Becoming a Rare ACTIVist

Run, ride or swim for the rare community, competitively or just for the fun of it. Ride Joburg, Swim for Sadie at the Midmar Mile, Two Oceans, or an event of your own. You don't have to be fast. A parkrun counts as much as a 94.7.

Tell us what you're planning and we'll set you up with a GivenGain fundraising page, kit, and the words to use if you're not sure what to write. Rare disease is invisible, which is most of the problem, so a person in an RDSA jersey at a start line is worth as much as what you raise.

Takes about two minutes.

Get moving for Rare

Volunteers

Events need hands. So does admin, packing, and the unglamorous work that keeps a small team doing national work. If you have time to give, we'll find a good use for it.

Tell us roughly what you'd like to do and how often, and we'll come back to you when something fits. There's no minimum commitment and no guilt if life gets busy. There is a short onboarding and a volunteer agreement to sign before you start, and we'll send both through once we've had a chat.

Takes about two minutes.

Send your application

Become a donor.

Time, money or sweat: money is the one that keeps navigators employed and the phone answered in six months' time. One-off or monthly, and monthly is what lets us plan.

Every donation is Section 18A tax deductible, and we'll send your certificate. We're a registered NPO, NPC and PBO, independently audited, and we cap income from pharmaceutical and related industries at one third of total funding so our advocacy stays independent.

Takes a minute.

Donate today