Cycling the Cape Town Cycle Tour with Cystic Fibrosis
The 2023 Cape Town Cycle Tour, previously known as the Cape Argus, had two rare cyclists this year, Jason van’t Slot and Carmen Möller. Both have been diagnosed with cystic fibrosis, a rare inherited genetic disease that affects multiple organs in the body, primarily...
The CF Registry – Annual Report 2021
This third edition of the Cystic Fibrosis Registry Annual Report represents a great achievement for the South African Cystic Fibrosis (CF) community, who initiated the registry project in 2018. The relevance and importance of the registry and the information we...
Strength in Unity: How the Cystic Fibrosis Community in South Africa Overcomes Rarity Through Solidarity.
Living with cystic fibrosis (CF) in South Africa can be challenging, but it also makes us unique. There are roughly 550 people who have been diagnosed with CF, though this figure may be slightly higher due to patients being undiagnosed or misdiagnosed in the past when...
What makes CF Patients Rare?
#ShareYourRare In conjunction with #raredieseasemonth, SACFA thought we would explore what makes Cystic Fibrosis patients, and the disease, rare. If you haven't heard of Cystic Fibrosis (CF) you can find more information on it on our website using the following link:...
A reminder to adult CF patients who attend CMJAH
To all those who historically attended the CMJAH Adult Cystic Fibrosis Clinic at Ward 496, please book follow up appointments at the CMJAH Adult Respiratory Clinic. This is a general respiratory clinic but you will be seen by a pulmonologist, have your medication...
The CF Registry – Annual Report
It is with great pride and a collective sense of achievement that we present the SA CysticFibrosis Registry report for 2019-2020. The collection of data for this period coincided witha time in which healthcare provision and services for people with CF were severely...
Update on access to Trikafta from CFNFC
The CFNF Committee has been engaging with Vertex and various stakeholders over the past twelve months to ascertain the affordability and access to Vertex's modulator treatments, namely Trikafta and Kalydeco. The last engagement was held on the 23rd of September, 2021....
COVID vaccination in people with CF and their families: MSAC Advisory Statement
The CF Medical and Scientific Advisory Committee in South Africa (MSAC) welcomes the news that people from 12 years of age in SA are now eligible for COVID-19 vaccination. Worldwide, including SA, COVID-19 and the pandemic has had a devastating impact on the health...
I can eat while I sleep, what is your superpower? – A story about feeding tubes and CF
I can eat while I sleep, what is your superpower? All people need food to live. Sometimes a person cannot eat enough food to keep up with what his/her body needs when it is suffering from an illness. When this occurs, nutrition may be supplied in a different way. One...
Finding out more about SACFA from Alan Dunn the chairperson
May is Cystic Fibrosis awareness month and we want to tell you more about the South African Cystic Fibrosis Association by asking Alan Dunn Chairperson of SACFA and SACFA Central Region (Gauteng) a few questions. Alan has been part of SACFA Central region since 1990,...