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Summer Time & Cystic Fibrosis We all love summer and the holiday period but it can bring with it some challenges if you are living with Cystic Fibrosis (CF) or caring for someone with CF. Below are a few summertime tips to help you manage the warmer weather. Dehydration and Salt Replacement As you […]
Welcome to our new team member Maggie! Hello everyone, my name is Maggie and I am the new Resource Development and Training Officer. I am originally from the United States, growing up in Washington state, but I have also lived in Missouri, Oregon, and Texas. Originally, I came to Australia for a gap-year holiday. The […]
A 10 pack of mixed Christmas cards (3 designs).
ORKAMBI Access 1 October 2018 Greg Hunt MP has announced that ORKAMBI (lumacaftor/ivacaftor), the first medicine to treat the underlying cause of cystic fibrosis in people with two copies of the F508del mutation, will be made available on the Pharmaceutical Benefits Scheme (PBS) from 1 October. Additionally, immediate compassionate access will be granted to certain […]
PCH Orkambi Roll-out The CF team at Perth Children’s Hospital have provided us with the following statement regarding the rollout of Orkambi: Dear CF families, Many of you will be aware that the Pharmaceutical Benefits Advisory Committee has approved access to Orkambi (ivacaftor/lumacaftor) for CF patients six years and over who are homozygous for (have […]
2018 Siblings & Offspring Camp The CFWA Siblings’ and Offspring Camp is coming soon! This camp is FREE for all participants thanks to generous support from Mazda Foundation. Date: 2-4 October (2nd week of school holidays) Location: Camp Kulin Registration: Online here Along with the Kulin Camp leaders there will be four Cystic Fibrosis WA […]
WA families rejoice the approval of a lifesaving drug Melissa Gibson is cheering very loudly. Today Melissa and husband Justin are celebrating the Pharmaceutical Benefits Advisory Committee (PBAC) much awaited announcement that a deal with Vertex Pharmaceuticals for access to a life-saving drug called Orkambi® for son Toby has finally been achieved. For Toby, who […]