Rare Diseases South Africa

General information

Rare Diseases South Africa is a registered NPO, and Public Benefit Organization.
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. New/Second hand items can be advertised/sold/communicated on this page.
https://www.facebook.com/groups/1399956500242406/