Rare Diseases Advisory Board - Is there a need?

We are excited to announce the potential establishment of an Independent South African Rare Disease Advisory Board and would like to invite you to join us for an open discussion on its need structure, governance, and setup.

Format: An online panel discussion, starting with a brief presentation by Prof. Chris Hendriksz, who will share his experience of a similar application in the United Kingdom and discuss how it could benefit all rare disease patients in South Africa.

Objective: To explore the format of the advisory board and to ensure it is representative of all key stakeholders in the rare disease community.

We are seeking to assemble a diverse group of participants, including clinicians, genetic counsellors, epidemiologists, researchers, patient organisations, pharma representatives, and any additional stakeholders to ensure independence from any specific group.

Speakers include:

• Prof Chris Hendriksz - A Rare Cause
• Kelly du Plessis - Rare Diseases SA
• Prof Chris Vorster - North West University
• Dr Jacques Snyman - SAMA
• Dr Samantha Iyaloo - Council for Medical Schemes
• Charlton Murove - Board of Healthcare Funders
• Fakir Chavoos - IPASA

We hope you will consider joining us as a participant or panellist to share your perspective and help shape the future of rare disease management in South Africa.