What makes CF Patients Rare?

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:...

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A reminder to adult CF patients who attend CMJAH

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...

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The CF Registry – Annual Report

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...

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Update on access to Trikafta from CFNFC

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....

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Finding out more about SACFA from Alan Dunn the chairperson

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,...

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Story from a CF teen

Story from a CF teen

Hello – I am Dayyaan I turn 18 on the 5th July this year, and I have Cystic Fibrosis.  So does my brother, Daniywal who is 13 years old. I live in the Western Cape, Surrey Estates, and presently attend Greenpoint Salesian Institute. I have many, many interests…...

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Life with CF – How is it Treated

Life with CF – How is it Treated

There is currently no cure for Cystic Fibrosis.  While there are a lot of medical breakthroughs, treatment mostly involves trying to stop the progression. In South Africa, we do not have access to the latest modulator treatments that slow down the progression (yet)....

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Tribute to a special doctor- Dr Sue Klugman

Tribute to a special doctor- Dr Sue Klugman

Tribute to Dr Klugman  Dr Susan Klugman retired from the Johannesburg CF Paediatric Clinic (CMJAH) at the end of November 2020. Her retirement came after 32 years of commitment and dedication to the treatment of children with cystic fibrosis, as well as other chronic...

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