Living with Epidermolysis Bullosa (EB) is a daily battle. Often referred to as “butterfly skin” disease , EB is a rare genetic disorder...

07 Feb 2025 - Johannesburg It is with profound sadness and deep respect that we gather our thoughts to honor the remarkable life and...

7 February 2025 - Johannesburg Rare Diseases South Africa NPC (RDSA) announces the departure of Dr Helen Malherbe from her role as a...

21 September 2023, New York – A high-level meeting at the United Nations Headquarters, UN Member States gathered to accelerate progress...

August marks exactly a year since Rare Diseases South Africa issued the following press release in respect of our #FigthForZach. Despite...

IRDiRC, a global collaborative initiative with the vision to enable all people living with a rare disease to receive an accurate...

Including all individuals with intellectual disabilities! March 21st is World Down Syndrome Day (WDSD), this global awareness day has...

The 3rd March 2022 is World Birth Defects Day (WBDD) - a day when we recognise birth defects and their impact on the world. WBDD began as...

This year for World Rare Disease Day (WRDD) on the 28 February 2022, Rare Diseases South Africa (RDSA) is redefining what it means to be...

The 15th of February marks International Childhood Cancer Day (ICCD) and is used to continue to create a greater awareness and education...

Gold September is an annual campaign worldwide to raise awareness of childhood cancer. There are many advances in paediatric oncology,...

Symposium to address the way forward for rare diseases in South Africa The Rare Diseases Access Initiative (RDAI) in association with...

28th February 2019; Government’s National Health Insurance (NHI) scheme represents a substantial policy shift to restructure healthcare...

To mark the occasion of Rare Disease Day 2019 the NGO Committee for Rare Diseases organised its second high-level event at the United...