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 onl
ine 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
Meet Jacques de Wet, a long-time Rare ACTIVist and dad to Zach, who has Hunter Syndrome. Jacques has spent years fighting for access to treatment and is currently preparing for a High Court case to secure care for his son.
Now, he's gearing up for the Ride Joburg 947 to raise awareness and funds for families fighting rare diseases. Join Jacques on the team and pedal with purpose.
🌷For families caring for a loved one with a rare disease or genetic disorder, every day is a battle. They need a lifeline, a beacon of hope, and you can be that light. By volunteering just a bit of your time, you can bring comfort, joy, and hope. Email us at events@rarediseases.co.za and let's make a difference together. ☀️
09/08/2025
Happy Women's Day to all the incredible ladies out there! A special shout-out to the brave women living with rare diseases and those caring for children with rare conditions. Your strength and resilience inspire us every day. Let's also take a moment to appreciate the caregivers who provide unwavering support. You are all truly remarkable!
06/08/2025
🏆Get ready to pedal for a purpose at the 947 Ride Joburg 2025! Join us in riding for the South Africans affected by rare diseases. Let's make a difference together! 🚴♀️
Join us for a powerful conversation with the South African National Blood Service as we dive into the importance of blood and stem cell donation in the rare disease space. From matching donors to saving lives—you’ll hear firsthand why blood donation could be someone’s miracle.
18/07/2025
Recalculating...
📚We have received books and shelves, and are still receiving books and shelves.
Watch this space for Imagination Station installations happening over the next few weeks.📚
Happy Mandela Day
16/07/2025
***Calling All Marketing & Communications Experts***
This Mandela Day, we’re reaching out for help, not just for one day, but to build something that strengthens our impact every day.
As a non-profit supporting thousands of patients across South Africa, marketing is one of the most underfunded areas of our work. We pour our limited resources into direct support, and as a result, the tools that help us grow, connect, and communicate are often left behind.
That’s why we’re looking for marketing professionals, agencies, or CSI teams who want to make a tangible impact this Mandela Day by helping us build a solid, scalable marketing strategy.
We’re hoping for support in:
- A digital marketing strategy
- Analysis of our current and potential marketing audiences
- Support with onboarding and growing subscribers and members
- Streamlining our messaging and brand voice
- Identifying tools or platforms to improve marketing reach and automation.
💛 If you or your team can offer your skills, your time, or your tools — we would love to collaborate with you on a project that truly gives back. 💛
Let’s make this Mandela Day one that creates lasting change for our patient community.
16/07/2025
Our latest Rare Community Newsletter just went out.
✨ Why subscribe?
-Get updates on what happened at the World Health Assembly ...
-Read real stories from the Rare community
-last minute Mandela Day opportunities and how to pedal for a cause
📩 It’s free, and all it takes is a scroll.
Just head to our website, scroll down, and hit subscribe: https://www.rarediseases.co.za/
14/07/2025
Today's Org Spotlight: 💜 Rare Diseases South Africa is changing the landscape for people living with rare conditions—one policy, one patient, one powerful voice at a time. 🇿🇦
In a country where access to diagnosis and treatment can be limited, this organization is leading the charge for better care, stronger advocacy, and national recognition for the rare disease community.
🌍 Discover how they're building a beacon of hope across South Africa—read more at knowrare.com/blog
02/07/2025
📚 Mandela Day – Imagination Stations 📚
In case you missed our Mandela Day initiative, here’s your chance to get involved in something meaningful.
"What counts in life is not the mere fact that we have lived. It is what difference we have made to the lives of others." – Nelson Mandela
This year, we’re turning imagination into impact by collecting books for individuals living with rare diseases and congenital disorders. Through our Imagination Stations, we’re creating opportunities for connection, comfort, and empowerment through the power of stories.
💛 Whether it’s one book or many, your donation can make a real difference.
📖 Donate a book. Donate a station. Share a story. Spark hope.
01/07/2025
Today, Vodacom is hosting its 2nd Africa Accessibility Conference at Vodacom World in Midrand, Johannesburg. A powerful gathering focused on advancing accessibility and inclusion across the continent.
We’re proud to share that Rare Diseases South Africa NPO 120-991 was invited to exhibit our products and services at this impactful event. Representing us are our passionate team members Fiona Sanders, Nomsa Noxolo Dlamini, and Hlumela Tshijila, who are engaging with attendees and showcasing how we’re working to improve the lives of those affected by rare diseases.
A heartfelt thank you to Vodacom for creating a platform that champions inclusive innovation and accessibility for all.
Address
The Station Bryanston, 63 Peter Place, Bryanston, Sandton
Be the first to know and let us send you an email when Rare Diseases South Africa NPO 120-991 posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.
Contact The Practice
Send a message to Rare Diseases South Africa NPO 120-991:
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:
VISION: A South Africa where those impacted by Rare Diseases access life-saving treatment and supportive care for improved quality of life.
MISSION: Bridging the gap to improved quality of life for those impacted by rare diseases through advocacy and empowerment.
VALUES AND PRINCIPLES: Equality, Care, Dignity and Empowerment.
