Rare Diseases South Africa NPO 120-991

Rare Diseases South Africa NPO 120-991 Rare Diseases South Africa is a registered NPO, and Public Benefit Organization. New/Second hand items can be advertised/sold/communicated on this page.

Rare Diseases South Africa is a registered NPO (120-991) and PBO (930060119), advocating for and supporting the rare disease community through awareness, access to care, and patient support across South Africa. We aim to ensure that all rare disease patients receive access to treatment and supportive care for improved quality of life. We have various online groups which can assist and benefit our

patients:

Rare Diseases SA Support group:
This group aims to provide a secure, open platform where rare disease patients can ask questions/ give and gain support and generally just communicate with other rare disease patients. https://www.facebook.com/groups/326602834153888/?fref=ts

Conversations for caregivers:
This group has been created for Caregivers of rare disease patients. This group is a closed group and therefore only members can see post, which makes it an open place to share your stories. https://www.facebook.com/groups/1433357163499090/?fref=ts

Mothers of Bereaved Angels: This group is for bereaved mothers who have lost children to a rare condition. It is intended to function as a peer support group and provide moms with a safe platform to express their feelings and emotions. https://www.facebook.com/groups/262905480543465/?fref=ts

Swop Shop for Special Needs Items:
This page is for people trying to source special needs equipment. https://www.facebook.com/groups/1399956500242406/

21/08/2026

A small action can make a big impact. 💙

By adding Rare Diseases South Africa as your MySchool MyVillage MyPlanet beneficiary, you help us provide vital support, education, and advocacy to individuals and families living with rare diseases, at no extra cost to you.

Watch this quick guide to see how easy it is to add RDSA as your cause and start making a difference with every swipe.

Sending lots of love and birthday wishes to our amazing Su! 🎂✨Today, we celebrate someone who brings so much dedication,...
17/08/2026

Sending lots of love and birthday wishes to our amazing Su! 🎂✨

Today, we celebrate someone who brings so much dedication, kindness, and heart to everything she does. Your hard work, thoughtfulness, and unwavering support never go unnoticed, and we are incredibly grateful to have you as part of our team.

Some people are simply too special not to celebrate. Thank you for your caring spirit, your commitment, and all the ways you make our team stronger every day. We appreciate you more than words can say.

Wishing you a year ahead filled with love, laughter, good health, success, and countless reasons to smile. May it be as wonderful as you are.🩵

17/08/2026

Word of the Week ✨

"I can do things you cannot. You can do things I cannot. Together we can do great things."- Mother Teresa 🩵

Our Patient Support Fund currently has a balance of R187 available.There is no clever fundraising campaign behind this ...
14/08/2026

Our Patient Support Fund currently has a balance of R187 available.

There is no clever fundraising campaign behind this post. No glossy graphic. This is simply where we are.

We no longer have a dedicated fundraiser, and the impact is becoming painfully clear.

But patients have not stopped needing us.

People still need transport to hospital. Families still need help navigating the healthcare system. Patients still need support when treatment is declined. Community programmes still need to happen. Phones still need to be answered. Cases still need to be fought. Our team still needs to be there.

We cannot do that on R187.

So today we are asking, very simply, for help.

If you can donate R100, please do.
If you can commit R200 a month, that would be transformative.
If your company has CSI funding available, please talk to us.
If you cannot donate, please share this post.

We have spent years fighting to make sure that people living with rare diseases in South Africa are not forgotten.

Today, we are asking you not to forget us either.

Help us keep RDSA here for the patients who need us.

Donate options: https://linktr.ee/raredonate

We were pleased to engage with the IEC in a constructive conversation about creating a more accessible and inclusive vot...
13/08/2026

We were pleased to engage with the IEC in a constructive conversation about creating a more accessible and inclusive voting experience for persons with disabilities. 🗳️💙

These discussions are an important step towards ensuring that every citizen can exercise their right to vote with dignity, independence, and confidence.

For information on special votes, please visit the IEC website.

We will continue to share updates and information that may be helpful to our community.🩵

13/08/2026

RDSA is currently at an IEC meeting, discussing the voting process for those with disability.

Please could you give us an indication of your needs / preferences via the polls below.

Here is the link to the survey,

https://forms.cloud.microsoft/r/h4ynd9DTRC

Share your views and thoughts!🫶🏾

Cold weather? We’re keeping warm the only way we know how! 😂We were meant to be taking pictures and getting back to work...
11/08/2026

Cold weather? We’re keeping warm the only way we know how! 😂

We were meant to be taking pictures and getting back to work, but it just happened to be Khanya’s birthday, so the team had to celebrate a little! 🕺🏾

It may not be an Idols audition, but it’s a perfect reminder of the laughs, love and memories we share as a team. 💙

09/08/2026

Today, we celebrate the women who show up, speak up, care deeply and keep going. 💜

To the women living with rare diseases, the mothers, caregivers, advocates, healthcare professionals, researchers, supporters and community champions who make a difference every day, we see you, we celebrate you and we are grateful for you.

Happy Women’s Day from all of us at Rare Diseases South Africa. 🌸

Address

Kingfisher House, 39A Kingfisher Road, Fourways
Johannesburg
2191

Opening Hours

Monday 09:00 - 16:00
Tuesday 09:00 - 16:00
Wednesday 09:00 - 16:00
Thursday 09:00 - 16:00
Friday 09:00 - 14:00

Telephone

+27105943844

Website

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