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/

We are deeply saddened to share that our beloved Patient Voice ambassador, Ashleigh Paterson, passed away peacefully thi...
28/11/2025

We are deeply saddened to share that our beloved Patient Voice ambassador, Ashleigh Paterson, passed away peacefully this week.

Ashleigh lived her rare journey with courage, honesty, and an openness that touched everyone who crossed her path. She advocated fiercely, she loved deeply, and she gave so much of herself to ensure others felt seen. She was a bright light, and her absence will be felt across our community, especially by those patients whom she supported so closely.

In the end, Ashleigh made the bravest decision of all. The decision to pass on her own terms. After a lifetime of fighting, of pushing through pain, hospitals, interventions, and endless uncertainty, she chose peace. She chose rest. She chose dignity.

So often we celebrate “fighting” as the only form of courage. But sometimes the bravest act is knowing when to stop fighting. Choosing to withdraw care is not quitting. It is not weakness. It is a moment of profound strength, love, and clarity.

Ashleigh showed us that being brave can also mean choosing comfort over suffering, choosing peace over prolonging pain, and choosing to step into the next chapter on your own terms.

Her story is a powerful reminder that every patient’s journey is deeply personal, and every choice deserves honour, respect, and compassion.

To her family and loved ones – we hold you in our hearts. Thank you for sharing her with us. Her impact on this community will not fade. The lessons she taught us about courage, vulnerability, and grace will continue to guide our work every day.

Rest gently, Ash. May you ride your horses, without limitation, in heaven.

A few years ago, Kelly du Plessis wrote this article for  health matters. Given the time of the year, we find our mental...
22/11/2025

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.

Take the time to read it and reach out if you need help.

assist@rarediseases.co.za

Make your Woolworths shop count.Select Rare Diseases South Africa on MyDifference and help us change lives, one purchase...
20/11/2025

Make your Woolworths shop count.

Select Rare Diseases South Africa on MyDifference and help us change lives, one purchase at a time.

Download the app today on the App Store and Google Play.

Join our first annual Rare Year-End Engagement This year took a lot out of many of us. Before we jump into 2026 and star...
18/11/2025

Join our first annual Rare Year-End Engagement

This year took a lot out of many of us. Before we jump into 2026 and start gearing up for Rare Disease Day, let’s share a moment together.

We are not planning a big presentation, no heavy agenda. Just an honest check-in.

🗓 Wednesday, 10 December
🕖 19:00
📍 2a485f69-385a-4979-89cb-a7e787345b64@10e67601-ecdf-449d-a299-d2bd927b43fc" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/2a485f69-385a-4979-89cb-a7e787345b64@10e67601-ecdf-449d-a299-d2bd927b43fc

If you’ve got something on your heart, something you want to carry into next year (or leave behind), come through— everyone is welcome.

A little late, but still raising awareness for the babies who arrived too soon. 💜
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.

Every purchase helps cover Zach’s legal fees and treatment. Grab something from our dinosaur collection and turn your lo...
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.

Our team has woken up to the news that our brave, bold and courageous Chanè is no longer with us. 🖤Her tumour grew signi...
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. 🕊️

Whether you're a patient, caregiver, healthcare professional, or academic, this guide is for you. The Dysautonomia Proje...
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.

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

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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: