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The Quiet Strength of Fathers: A Father’s Day Tribute from the Rare Disease Community
“A good father is one of the most unsung, unpraised, unnoticed, and yet one of the most valuable assets in our society.” – Billy Graham ...
Jun 132 min read
A Father's Strength: A Tribute to My Dad this Father’s Day
When people ask me where my strength comes from, I often smile—because the truth is, it started with my dad. Image supplied by Kerry...
Jun 81 min read
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...
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...
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...
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...
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...
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...
Mar 43 min read
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