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/

❤️ It’s World Heart Day ❤️Today, we pause to remember the 17 million lives lost each year to heart disease. Behind every...
29/09/2025

❤️ It’s World Heart Day ❤️

Today, we pause to remember the 17 million lives lost each year to heart disease. Behind every number is a story… a parent, a friend, a colleague, a loved one.

But there’s hope.

World Heart Day, created by the World Heart Federation, is a reminder that we can change the future. By making small, conscious choices, eating better, moving more, checking in on our stress, we protect not just our own hearts, but the hearts of those we love.

🫀 Your heart matters.
💬 Talk to your family about heart health.
💪 Take that walk.
🥗 Choose that nourishing meal.
💓 And most importantly, take care of yourself.

Let’s honour those we’ve lost by living better and helping others do the same.

The RDSA team 🫶🏻

At RDSA, we’re excited to share that EURORDIS has launched a new Rare Barometer survey — and we’d love for our community...
29/09/2025

At RDSA, we’re excited to share that EURORDIS has launched a new Rare Barometer survey — and we’d love for our community to get involved!

This global survey explores what helps people live with a rare or undiagnosed condition, from managing stress and daily life, to staying engaged at work, school, and in community life.

🕒 It takes about 25 minutes to complete and is available in 25 languages, open worldwide to people living with a rare or undiagnosed condition as well as their families. The survey runs until 16 November 2025.

Why it matters: The results will help shape advocacy for better support, resources, and tailored solutions for our community and your voice can make a real difference.

👉 Take the survey here: http://bit.ly/3Is70Vx

👉 Use the toolkit to spread the word: http://bit.ly/3KtNjxb

Let’s make sure the voices of people in South Africa are heard loud and clear! The more we participate, the stronger the impact will be.

🍝 Carbs & Camaraderie Before the Ride! 🚴‍♀️Join us for a night of fun, food, and friendship as we carbo-load in style be...
26/09/2025

🍝 Carbs & Camaraderie Before the Ride! 🚴‍♀️

Join us for a night of fun, food, and friendship as we carbo-load in style before the Ride Joburg 947! 🎉

Enjoy a delicious 3-course meal:
🥗 Starter: Focaccia & salad
🍕 Main: Pizza or pasta
🍨 Dessert: Ice cream with chocolate sauce

📅 R300 per person

🍷 Drinks for your own account

📧 RSVP to Judy at events@raredisease.co.za
Let’s fuel up together and get ready to ride! 💪

Mandela Day magic in action!This morning, Rare Diseases South Africa handed over our very first Imagination Station — a ...
23/09/2025

Mandela Day magic in action!
This morning, Rare Diseases South Africa handed over our very first Imagination Station — a vibrant mini-library filled with books and hope — to Witkoppen Clinic! 📚✨

Thank you to everyone who donated books, sponsored shelves, and supported our bookdrive. Because of you, children and families now have a safe, inspiring space to read, dream, and learn while waiting for care.

A special thank you to Olympus for donating all the bookshelves and for Shanna Hiemstra from Olympus for being there for the hand-over.

Let’s keep Madiba’s legacy alive! We’re aiming to install Imagination Stations in more clinics and schools. Want to get involved? Donate books, sponsor a shelf, or host a bookdrive.�
Contact us: hello@rarediseases.co.za

💙 Pitt Hopkins Awareness Day 💙This March, we finally got answers — our daughter Tianke was diagnosed with Pitt Hopkins S...
18/09/2025

💙 Pitt Hopkins Awareness Day 💙

This March, we finally got answers — our daughter Tianke was diagnosed with Pitt Hopkins Syndrome, a rare genetic disorder.

She’s 6, non-verbal, full of love, and stronger than we ever imagined. Her journey has been tough, but her spirit is unbreakable.

We share her story to raise awareness, offer hope, and honour every child like Tianke. https://bit.ly/4nGxLVu

Caring for someone with a rare disease can feel isolating—but you don’t have to face it alone. We have over 75 private W...
18/09/2025

Caring for someone with a rare disease can feel isolating—but you don’t have to face it alone. We have over 75 private WhatsApp support groups designed especially for caregivers like you.

Find your community and share your experiences in a safe, supportive space. Contact Ankia at +27 72 729 5330 or check out this link to join a group: http://bit.ly/46w4wOd

With a USD 500 grant from the World Patients Alliance, RDSA’s “Safe Beginnings at Charlotte Maxeke” activation has trans...
17/09/2025

With a USD 500 grant from the World Patients Alliance, RDSA’s “Safe Beginnings at Charlotte Maxeke” activation has transformed a hospital corridor into an interactive campaign. Passers-by are greeted with bold multilingual posters, offered button badges carrying the message “Patient safety from the start!”, and invited to engage in conversation with volunteers and patient advocates. 📸A photo “Insta-Frame” adds a playful touch but with a serious purpose: each picture and pledge shared reinforces the collective responsibility to keep children safe in care.👶🏽

Read the press release here: http://bit.ly/4nGuS77

✨ Today, the corridors of Charlotte Maxeke Johannesburg Academic Hospital feel a little different. Amid the everyday rhy...
17/09/2025

✨ Today, the corridors of Charlotte Maxeke Johannesburg Academic Hospital feel a little different. Amid the everyday rhythm of doctors, nurses, patients, and caregivers, a beautiful moment of pause has emerged.

🩵 Rare Diseases South Africa (RDSA) has created a space filled with heart, hope, and purpose — reminding us that patient safety is not just a protocol, but a promise.

👶 This World Patient Safety Day, we shine a light on the tiniest fighters among us — our newborns and children — with the powerful theme:
“Safe Care for Every Newborn and Every Child”
and the heartfelt slogan:
“Patient Safety from the Start!”

Let’s stand together to protect every little life, from day one. 🌍💫

Read the press release here: http://bit.ly/4nGuS77

🏌️‍♂️ Calling all golf lovers!Get ready for a swingin’ good time at the Rare Diseases Charity Golf Day ⛳📅 30 October📍 Si...
16/09/2025

🏌️‍♂️ Calling all golf lovers!

Get ready for a swingin’ good time at the Rare Diseases Charity Golf Day ⛳

📅 30 October
📍 Silver Lakes Golf Club
🎉 It’s going to be a feel-good, do-good kind of day — all in support of a powerful cause!

Right now, we’re just checking who’s keen — no payments, no pressure.

Whether you want to play, cheer, or simply support, we’d love to hear from you!

👉 Register your interest here: https://www.rarediseases.co.za/golf-day

Big thanks to our amazing sponsor, Sensifemme 💙


Silver Lakes Golf Club Sensifemme SA

This month, we shine a light on Idiopathic Intracranial Hypertension, a rare neurological disorder that predominantly af...
16/09/2025

This month, we shine a light on Idiopathic Intracranial Hypertension, a rare neurological disorder that predominantly affects women in their child-bearing years, though it can impact anyone.

IIH can be life-altering, and early diagnosis, proper care, and ongoing research are essential to improving outcomes. Behind every patient is a network of caregivers, families, and communities who walk this journey with them; your support matters deeply.

→To those living with IIH: 𝐲𝐨𝐮 𝐚𝐫𝐞 𝐧𝐨𝐭 𝐚𝐥𝐨𝐧𝐞.
→To caregivers and loved ones: 𝐲𝐨𝐮𝐫 𝐫𝐨𝐥𝐞 𝐢𝐬 𝐢𝐧𝐯𝐚𝐥𝐮𝐚𝐛𝐥𝐞.
→To researchers and advocates: 𝐲𝐨𝐮𝐫 𝐰𝐨𝐫𝐤 𝐛𝐫𝐢𝐧𝐠𝐬 𝐡𝐨𝐩𝐞.

Let’s raise our voices for better understanding, stronger support, and a future where IIH is better recognised and treated.

👉 Join Rare Diseases SA as a patient or caregiver: https://www.rarediseases.co.za/join-our-community

🚴‍♀️ Karin Lourens is riding the 947 Ride Joburg for her husband, who lives with Myasthenia Gravis (MG), a rare autoimmu...
13/09/2025

🚴‍♀️ Karin Lourens is riding the 947 Ride Joburg for her husband, who lives with Myasthenia Gravis (MG), a rare autoimmune disease that causes severe muscle weakness, often affecting the eyes, face, throat, and limbs.

This race is more than just a challenge. It’s a tribute. It’s love in motion. 💚

We’re rooting for you, Karien! Thank you for taking on Joburg’s toughest race to raise awareness and hope.

👉 Want to ride for a cause too? Join the Rare Diseases SA team and wear our specially designed jersey with pride.
Sign up here: https://bit.ly/ride4rare
📧 Or contact Judy at events@rarediseases.co.za

Did you know? The Rare Bear Project helps our patients feel seen and supported, especially when they spot another Rare B...
11/09/2025

Did you know? The Rare Bear Project helps our patients feel seen and supported, especially when they spot another Rare Bear in hospital. It’s a quiet but powerful reminder: you’re part of a community that cares. 🤍

Each donated bear goes to a newly registered rare disease patient, offering comfort during treatment and beyond.

To donate a Rare Bear, select FREE SHIPPING at checkout.

🧸 http://bit.ly/41NkMZu

Address

The Station Bryanston, 63 Peter Place, Bryanston, Sandton
Johannesburg
2021

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: