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
A few years ago, Kelly du Plessis wrote this article for health matters.
Given the time of the year, we find our mental health slipping and anxiety levels on the rise with the festive season upon us, we thought a little refresh of the impact of “continues traumatic stress disorder” would be wise.
If you’ve got something on your heart, something you want to carry into next year (or leave behind), come through— everyone is welcome.
18/11/2025
A little late, but still raising awareness for the babies who arrived too soon. 💜
17/11/2025
A huge thank you to The House of Yay and everyone who joined the first Lego Marble Challenge.
Every team, every laugh, every slow marble helped push the mission forward.
14/11/2025
Every purchase helps cover Zach’s legal fees and treatment. Grab something from our dinosaur collection and turn your love for dinos into real support for a little boy who’s been fighting far too long.
11/11/2025
Our team has woken up to the news that our brave, bold and courageous Chanè is no longer with us. 🖤
Her tumour grew significantly over the past few days and her body just couldn’t take anymore.
Our sweet, precious girl, please know how proud we are of you. You smiled until the very last day.
Know that we will miss you dearly, and that our team will always have an open space that will carry your name.
We will miss you so very much, but we send you on your way, knowing that your lungs can fill with fresh air, and that you are pain free. 🕊️
07/11/2025
Whether you're a patient, caregiver, healthcare professional, or academic, this guide is for you.
The Dysautonomia Project is an essential resource for anyone navigating autonomic nervous system disorders. It blends clinical insight with lived experience, making complex conditions more understandable and actionable.
📘 Available now from Rare Diseases South Africa
🛒 Order here: rarediseases.co.za/product-page/the-dysautonomia-project
06/11/2025
Want to turn your everyday Woolies shop into a meaningful donation? 🛒
Here’s how to sign up for the My Woolies App and select Rare Diseases South Africa as your cause. Every swipe counts and it won’t cost you a cent.
🎥 Watch the quick walkthrough
🤝 Choose RDSA under “Causes”
🛍️ Shop as usual. Make an impact.
Let’s make giving part of the grocery run.
05/11/2025
We need your feedback and input on this question.
Today, whilst in a discussion with a medical scheme, I was asked a question that really made me think.
“Is it fair for one person with a rare disease to receive treatment that costs millions each year, when others can’t get access to much cheaper care?”
My honest answer? I don’t always agree with how much rare-disease medicines cost. But if someone has a legislation right to that treatment, then yes they should receive it regrdless of cost because that is what the LAW entails. Access to healthcare shouldn’t depend on how rare / costly / difficult your condition is.
This is a tough issue. We know our healthcare system is under pressure. But for families living with rare diseases, these treatments are often the only lifeline.
What do you think? Should medical aids be required to fund these expensive treatments? Or should medical schemes take a more frugal approach to the benefit of the entire schemes membership?
We’d love to hear your thoughts below. Respectful discussion encouraged.
Address
The Station Bryanston, 63 Peter Place, Bryanston, Sandton Johannesburg 2021
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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.