top of page
blog
Search
20 Years in the Dark: My Journey to an Ehlers-Danlos Syndrome Diagnosis
Supplied: Chloe Davies, Age 24 I was diagnosed with Ehlers-Danlos Syndrome (EDS) just last year — but my symptoms started when I was only...
Hlumela Tshijila
May 292 min read
Adoption of Resolution for Rare Diseases has been passed at WHA78 in Geneva
BREAKING NEWS FROM GENEVA! The Resolution on Rare Diseases has officially been adopted at the 78th World Health Assembly (WHA78)! This is...
Rare Diseases SA
May 241 min read
Unified Effort: South Africa's Commitment to Disability Inclusion
18 April 2025 - Johannesburg. Rare Diseases South Africa (RDSA) is excited to share some important updates regarding South Africa's...
Rare Diseases SA
Apr 183 min read
Running for Awareness, a Sister’s Fight Against a Rare and Painful Disease
Living with Epidermolysis Bullosa (EB) is a daily battle. Often referred to as “butterfly skin” disease , EB is a rare genetic disorder...
Rare Diseases SA
Apr 43 min read
Building an Inclusive Future: Human Rights Day and World Down Syndrome Day 2025
On Friday, 21 March 2025 , South Africa observes both Human Rights Day and World Down Syndrome Day (WDSD) —a meaningful intersection...
Rare Diseases SA
Mar 212 min read
Rare Disease Awareness 28 February 2025
Written by Michelle Norman, Umduduzi High Level Administrator and mother of 3. Brayden, grade 9, Jesse (2014 to 2017) and Gia (2020 to...
Hlumela Tshijila
Mar 43 min read
Rare Disease Day on 28 February spotlights the lives of over 4.2 million South Africans with rare and difficult to treat diseases
JOHANNESBURG, 27 February 2025 – The lives of millions of South Africans with a litany of rare diseases can be vastly improved, and even...
Rare Diseases SA
Feb 274 min read
Great news from the Jada Foundation
Johannesburg, 14th February 2025 - Rare Diseases South Africa is thrilled to share the news coming out the Jada Foundation this week. ...
Rare Diseases SA
Feb 142 min read
Rare Diseases South Africa Welcomes WHO Executive Board’s Historic Recommendation on Rare Diseases
Johannesburg, South Africa – 12 February 2025 Rare Diseases South Africa (RDSA) proudly welcomes the historic decision by the World...
Rare Diseases SA
Feb 122 min read
In Memory of Dr Mehnaaz Ally
07 Feb 2025 - Johannesburg It is with profound sadness and deep respect that we gather our thoughts to honor the remarkable life and...
Rare Diseases SA
Feb 72 min read
bottom of page