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 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

Swop Shop for Special Needs Items:
This page is for people trying to source special needs equipment. https://www.facebook.com/groups/1399956500242406/

Today, we come together to raise awareness, share stories, and stand in support of everyone affected by CDKL5. Together,...
17/06/2026

Today, we come together to raise awareness, share stories, and stand in support of everyone affected by CDKL5.

Together, we can shine a light on this rare condition, amplify every voice, and build a community of strength, understanding, and hope. 💕

Yesterday may have been just a normal Saturday for you and your family, but for us, it was something special. Our famili...
14/06/2026

Yesterday may have been just a normal Saturday for you and your family, but for us, it was something special.

Our families came together, laughter filled the air, and endless hugs and baby cuddles made the day even brighter. We captured beautiful memories that we’ll cherish for years to come.

Chad somehow managed to get a cat to watch cat videos,
Alex was busy exploring and keeping everyone on their toes, and as for Sam… she officially became our baby hoarder! ❤️

Today we mark Batten Disease Awareness Day 💛A rare and devastating condition that affects children and families, Batten ...
09/06/2026

Today we mark Batten Disease Awareness Day 💛

A rare and devastating condition that affects children and families, Batten disease reminds us why awareness, early diagnosis, and compassionate support matter.
Together, we can shine a light, build understanding, and ensure no one affected feels alone.

Birthday vibes = BIG savings!Get 15% OFF all Rare Diseases merchandise until 13 June Don’t miss out — celebrate with us ...
05/06/2026

Birthday vibes = BIG savings!

Get 15% OFF all Rare Diseases merchandise until 13 June

Don’t miss out — celebrate with us and show off Rare with pride!💙

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

You can still donate or get one of our Rare Bears!Visit our website for our current range. 🥳https://www.rarebearproject....
03/06/2026

You can still donate or get one of our Rare Bears!
Visit our website for our current range. 🥳
https://www.rarebearproject.org/category/handcrafted-soft-toys

Meet Zola 💚

Still available for just 13 × R100 ✨

Celebrate uniqueness and make something special theirs, Zola is ready to bring comfort, care, and a whole lot of love

Every piece tells a story. Every purchase makes a difference 💙As we celebrate, we invite you to honour the journey with ...
03/06/2026

Every piece tells a story. Every purchase makes a difference 💙
As we celebrate, we invite you to honour the journey with us.

15% OFF merch
Supporting the rare disease community

Shop now & be part of something bigger: www.raredisease.co.za

Ends 13 June🕺

Not every gift comes wrapped. Our Registry is officially open!We’ve created a simple way for you to support our rare dis...
02/06/2026

Not every gift comes wrapped.

Our Registry is officially open!
We’ve created a simple way for you to support our rare disease community in a way that works for you.

From sponsoring the magician at Family Day, to donating small items for our Women’s Day hampers, or simply contributing R200.

Every option helps us create meaningful moments of connection, celebration, and support for families living with rare diseases.

Choose what speaks to you and help us bring these moments to life.

Visit our Registry today, https://www.rarediseases.co.za/2026-wish-list

Let’s keep showing up, stepping up, and making a difference 💛Every step we take helps bring hope closer. Do it for the d...
29/05/2026

Let’s keep showing up, stepping up, and making a difference 💛

Every step we take helps bring hope closer. Do it for the dreamers.

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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