Founded in 2013, 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. 


Started out of personal need following the diagnosis of organisation founder, Kelly du Plessis' son, it became evident that there was a lack of awareness and support for rare diseases in general in South Africa. 


Since then, RDSA has successfully launched initiatives that have positively impacted the lives of over 1800 patients including engaging with various governmental departments, organs of state, industry players and strategic stakeholders to raise awareness and move rare disease policy forward.

Today, RDSA brings together international best practice and local medical innovation, driving a collective voice and playing a fundamental role in bridging the gap between vulnerable communities and medical advancement. 

who we serve

our principles 
Equality, Care, Dignity and Empowerment 
our vision

A South Africa where those impacted by rare diseases and congenital disorders access life-saving treatment and supportive care for improved quality of life. 

our mission

Bridging the gap to improved quality of life for those impacted by rare diseases and congenital disorders through advocacy and empowerment. 


In 2020, RDSA made the decision to absorb Genetic Alliance South Africa into its operations and expand our mandate to include congenital disorders.


The organisation is managed on a day-to-day basis by a CEO, who is assisted by selected external consultants. The Board of Directors also include individuals representing different sectors of the economy and people impacted by rare diseases.