The regional structures came into existence before the national body was formed, and therefore most activities are driven by the regional bodies, with the national body (SACFA) being more of an umbrella body, which monitors regional developments and handles issues which need to be addressed at national level.
The Medical & Scientific Advisory Committee for cystic fibrosis (MSAC) was formed under the auspices of SACFA. MSAC is an active and representative panel of experts in the various aspects of cystic fibrosis management.
The Cystic Fibrosis New Frontiers Committee (CFNFC) was established on 20 February 2020 and seeks to develop and implement a strategy which will provide affordable access to life-changing treatments for all CF patients.
The SACFA Board (Management Committee) is made up of:
- The Chair
- Two representatives from each of the 3 regions
- The Chair of MSAC or person designated by MSAC
- The Chair of CFNFC or person designated by CFNFC
SACFA Executive Committee will consist of SACFA Chair and regional chairs.
All important matters, including SACFA projects, campaigns and formation of SACFA sub-committees/cluster groups/WhatsApp groups need approval by SACFA Executive Committee.
Contact Details of Office Bearers:
Chairperson: Alan Dunn – 083 285 5853
Secretary: Nicky de Charmoy – 081 043 5232
Treasurer – Appointment in progress
The regional associations have been in existence for over 30 years, and are:
- Cystic Fibrosis Association Central Region (based in Gauteng)
- KZN Cystic Fibrosis Association
- Cape Cystic Fibrosis Association
They are all registered NPO’s and have 3 main objectives:
- To provide emotional support to families when their child has been diagnosed with cystic fibrosis.
- To promote early diagnosis and so have a positive impact on the progression of the disorder.
- To ensure that all those with cystic fibrosis receive proper treatment.
Summary of funding requirements
The regional associations raised funds for their own regions, and these are the main areas where the funds are applied.
- Funds are required to support the cystic fibrosis clinics around the country which are open to anyone with cystic fibrosis.
- Funds are needed to sponsor essential equipment for daily use by patients with financial constraints.
- Funds are required to promote public awareness, thus facilitating early diagnosis.
- SACFA Association supports the work done by the Medical & Scientific Advisory Committee (MSAC).