top of page

Rare Diseases Advisory Board - Is there a need?

Wed, 18 Sept

|

Zoom

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.

Registration is closed
See other events
Rare Diseases Advisory Board - Is there a need?
Rare Diseases Advisory Board - Is there a need?

Time & Location

18 Sept 2024, 18:00 – 19:30

Zoom

About the Event

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

Share This Event

RDSA-Logo-Colour-RGB-HR.png

Physical Address

The Station, 63 Peter Place, Bryanston, Sandton, 2021

Follow us on

  • Facebook
  • Instagram
  • Twitter
  • YouTube
  • LinkedIn

NPO: 120-991  NPC: 2016/071131/08  PBO: 930060119

© 2025  Rare Diseases South Africa NPC | Rights reserved

RDSA Privacy Policy 

Rare Diseases South Africa

NPO 120-991

The Station, 63 Peter Place, Bryanston, Sandton, 2021

(“the Organisation”)

 

MANUAL PREPARED IN ACCORDANCE WITH SECTION 51 OF THE PROMOTION OF ACCESS TO INFORMATION ACT NO. 2 OF 2000

bottom of page