About Us

Rare Diseases South Africa, formerly the Rare Disease Society of South Africa, was founded in 2013 by Kelly du Plessis. Founded out of personal need after the diagnosis of Kelly’ son, it quickly became evident that there was a lack of support and awareness on rare diseases in South Africa. RDSSA was established as a voluntary association of persons, and registered with Department of Social Development (NPO 120-991). The intention of this association was to be a support group for rare disease patients, and governed by the founding constitution.

In its short lifespan, RDSSA went through phenomenal growth, with an ever-increasing patient base.  In 2016, the decision was made to change the name from Rare Disease Society of South Africa to Rare Diseases South Africa, and to amend the voluntary association of persons to a registered NPC.  

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

In keeping with the reasons for establishing Rare Diseases South Africa, we have set out the following:

VISION: A South Africa where those impacted by Rare Diseases access life-saving treatment and supportive care for improved quality of life.

MISSION: To advocate and facilitate engagement between those with the ability to prevent, intervene, treat and provide supportive care for those impacted by rare diseases.

VALUES AND PRINCIPLES: Equality, Care, Dignity and Empowerment.

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Privacy Policy: Rare Diseases South Africa (RDSA) respects your privacy and is committed to protect the personal information that you share with us. Our database contains private information including name, address, contact information and medical information. If you provide any private or non-public information it will be restricted to site administrators and individuals on a need-to-know basis and will not be sold or given outside of RDSA without consent from you. 

Disclaimer: Rare Disease South Africa (RDSA) is a resource for sharing information and support. RDSA members, employees and executive board members do not offer medical advice. The information provided on the RDSA website, newsletter and message board are designed to support, not replace, the relationship that exists between a patient/RDSA member and his/her physician. Please verify any information you receive from RDSA with other sources and with your licensed health care provider. Decisions regarding medical care should be made with your healthcare provider. Consumers should never disregard or delay seeking medical advice due to the content of this website. The RDSA executive and medical boards, volunteers and moderators do not assume, and hereby disclaims, any and all liability to any person or entity for any claims, damages, liability or other loss including, without limitation, any liability for injury or other damage resulting from any use of, or reliance on, this service or from the posting of any content or material by any third party.

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