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 (RDSA) is a non-profit organisation advocating to ensure that people living with rare diseases and congenital disorders experience greater recognition, support, improved health service and better overall quality of life. 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/

Today is the last day of the month and Rare Disease Day is finally here đź’śDiagnosed with Neurofibromatosis Type 2 (NF2) a...
28/02/2026

Today is the last day of the month and Rare Disease Day is finally here đź’ś

Diagnosed with Neurofibromatosis Type 2 (NF2) at just twelve, she has spent her life navigating nerve tumours, repeated radiation, and complex surgeries.

Now thirty-six, tumours remain scattered through her head and spine. Care often means “watch and wait,” knowing another intervention will come. She now works remotely for Deafmetal, where her lived experience with hearing loss and disability is valued.

For her, equity means recognising that survival should never depend on medical aid or income. Many people with rare diseases in South Africa don’t have that chance.

Rare diseases aren’t invisible.
Equity in healthcare is not optional, it’s survival.

Read her full story on our website.

https://www.rarediseases.co.za/post/chromosome-22q12-encodes-merlin-to-inhibit-tumour-growth-i-lack-merlin-not-magic


Day 27 of Rare Disease Month đź’™Reshmie lives with multiple rare diseases , after thyroid cancer, a splenectomy, and part ...
27/02/2026

Day 27 of Rare Disease Month đź’™

Reshmie lives with multiple rare diseases , after thyroid cancer, a splenectomy, and part of her pancreas removed, she still reminds herself every day:
“I am still here, and I am still going.”
For her, equity means being heard.
The hardest part has been getting doctors to listen, trust her symptoms, and provide the treatment she needs, including biologics she still hasn’t received.
Rare diseases aren’t invisible.
Equity in healthcare is not optional, it’s a lifeline. 💙

Read her full story on our website.
https://www.rarediseases.co.za/post/through-hope-and-prayer-i-m-here


Family Funday Update!We’re truly on a roll as we gear up for Rare Disease Day, and thanks to your incredible support, ou...
26/02/2026

Family Funday Update!

We’re truly on a roll as we gear up for Rare Disease Day, and thanks to your incredible support, our online tickets are officially SOLD OUT!
But don’t worry, we’ve saved a limited number of spots for walk‑ins on the day. These will be available on a first‑come, first‑served basis, so be sure to arrive early to secure your place!
Our preparations are in full swing, and we can’t wait to share a fun‑filled, meaningful day with you and your family as we come together for the rare community.


RARE Merch Pre‑Orders 💙All items ordered now will be processed and delivered after Rare Disease Day.Please note we have ...
26/02/2026

RARE Merch Pre‑Orders 💙

All items ordered now will be processed and delivered after Rare Disease Day.
Please note we have limited staff available, so delays may occur, thank you for your patience and support!

You can view all available merch and pricing on our website. đź’™

https://www.rarediseases.co.za/shop


Day 26 Rare Disease Month 💙At just 15, Vixi was diagnosed with Behçet’s Disease, a rare, complex condition that had bee...
26/02/2026

Day 26 Rare Disease Month đź’™

At just 15, Vixi was diagnosed with Behçet’s Disease, a rare, complex condition that had been shaping her life long before anyone recognised it. Years of pain, unanswered questions, neurological decline, and dismissed symptoms left her struggling to hold on.
But in 2025, a specialist finally saw what others had overlooked, confirming Neuro‑Behçet’s and giving her a lifeline. With a new treatment plan, she’s walking, speaking, and slowly rebuilding her life.
For her family, equity means fair access to experts, treatment, and compassion, not luck, privilege, or relentless self‑advocacy.
Vixi’s journey is a reminder that invisible illnesses are real, rare diseases deserve understanding, and no one should fight alone.

Read more of her story on our website;
https://www.rarediseases.co.za/post/neuro-bechets-the-unknown-disease


Day 25 of Rare Disease Month đź’™Meet Zintle Sidzamba, who was diagnosed with SMA Type 4 in 2015. Before her diagnosis, she...
25/02/2026

Day 25 of Rare Disease Month đź’™

Meet Zintle Sidzamba, who was diagnosed with SMA Type 4 in 2015. Before her diagnosis, she was active and always on the move, but as SMA progressed, she had to adapt to a new way of living.
Despite the challenges, Zintle pushed forward. At the University of the Free State, she served on the SRC and as a CuADS representative, advocating for accessibility and equal support for students with disabilities.
Her family has been her greatest support system. After years of hiding her diagnosis, one honest conversation with her sister inspired her to speak openly — leading to opportunities like being featured in a global SMA awareness campaign.

Read more on our website;
https://www.rarediseases.co.za/post/embracing-my-journey-with-spinal-muscular-atrophy


Happy Birthday to Kelly!You lead, we follow… and occasionally panic. Here's to another great year!💙
25/02/2026

Happy Birthday to Kelly!
You lead, we follow… and occasionally panic. Here's to another great year!💙

Day 24 of Rare Disease Month 💙I’m Ruhan Adendorff, 34, and I live with Sotos Syndrome. Growing up wasn’t easy I was bul...
24/02/2026

Day 24 of Rare Disease Month đź’™

I’m Ruhan Adendorff, 34, and I live with Sotos Syndrome. Growing up wasn’t easy I was bullied, underestimated, and told I wouldn’t achieve much. But I proved them wrong.
Today I’m a high‑school graduate, a licensed driver, and a proud cattle farmer. I even became a finalist in the Rare Diamond Warrior Awards a moment that showed me how far I’ve come.
Sotos brings challenges, but it also taught me strength, patience, and pride in who I am. To me, equity means fairness, support, and lifting each other up.
You belong. There is always hope. Dream big your journey is your own.

Read more on our website,
https://www.rarediseases.co.za/post/unleash-believe-shine


Just a quick reminder Capetonians: if you haven’t bought tickets for your friends and family yet, please do so by Wednes...
23/02/2026

Just a quick reminder Capetonians: if you haven’t bought tickets for your friends and family yet, please do so by Wednesday. From 00h00 on Thursday, 26 February, online ticket sales will close.

Please also note that, due to the number of people we requested the venue to host, we will only have a limited number of tickets available at the door.

Get your tickets here:
https://www.rarediseases.co.za/event-details/rdsa-2026-family-fun-day

Wishing you a beautiful week ahead, and I can’t wait to see your lovely faces this weekend!


Day 23 of Rare Disease Month 💙From birth, Luke struggled to feed, cry­ing in pain as every bottle came back up. After mo...
23/02/2026

Day 23 of Rare Disease Month đź’™

From birth, Luke struggled to feed, cry­ing in pain as every bottle came back up. After months of being told it was colic or behaviour, a scope at 14 months finally revealed Eosinophilic Oesophagitis (EoE), a rare disease that makes eating hurt.
His family has tried every affordable treatment, but what he truly needs is Dupixent, a medication recognised overseas but still not supported locally. For them, equity means fair medical aid coverage and access to the treatment that could change his life.
Luke’s story reminds us why awareness, access, and support matter.

Read more on our website.
https://www.rarediseases.co.za/post/when-the-system-says-no-a-mother-s-plea-for-fair-treatment


Day 22 of Rare Disease Month đź’™Aiden was diagnosed with Epidermolysis Bullosa at eight months old after months of unanswe...
22/02/2026

Day 22 of Rare Disease Month đź’™
Aiden was diagnosed with Epidermolysis Bullosa at eight months old after months of unanswered questions. Every day brings pain, wound care, and challenges most can’t see yet he keeps showing up with strength and determination.
For his family, equity means access to specialists, proper dressings, and the support of DebraSA, a lifeline on the hardest days.
Aiden’s story reminds us why awareness, access, and community matter.

Read more on our website,
https://www.rarediseases.co.za/post/epidermolysis-bullosa-awareness


Day 21 of Rare Disease Month 💙For 16 years she has lived with a life‑threatening clotting disorder surviving multiple DV...
21/02/2026

Day 21 of Rare Disease Month đź’™

For 16 years she has lived with a life‑threatening clotting disorder surviving multiple DVTs, a pulmonary embolism, chronic pain and endless uncertainty.
But through fear, resilience, and hope, she continues fighting for herself and her children.
Her story is a powerful reminder of why equity matters: access, answers, and support can change everything.

Read more on our website,
https://www.rarediseases.co.za/post/keeping-hope-through-pain


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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Our Story

Rare Diseases South Africa, formerly the Rare Disease Society of South Africa, was founded in 2013 by Kelly du Plessis. Founded out of personal need after the diagnosis of Kelly’ son, it quickly became evident that there was a lack of support and awareness on rare diseases in South Africa. RDSSA was established as a voluntary association of persons, and registered with Department of Social Development (NPO 120-991). The intention of this association was to be a support group for rare disease patients, and governed by the founding constitution.​

In its short lifespan, RDSSA went through phenomenal growth, with an ever-increasing patient base. In 2016, the decision was made to change the name from Rare Disease Society of South Africa to Rare Diseases South Africa, and to amend the voluntary association of persons to a registered NPC.

​The Board of Directors include individuals representing different sectors of the economy and people impacted by rare diseases. The organisation is currently managed on a day-to-day basis by a CEO, who is assisted by selected external consultants.

In keeping with the reasons for establishing Rare Diseases South Africa, we have set out the following: