The Scottish Government has announced a deal with Vertex Pharmaceuticals for access to life-saving medicine Kaftrio on the day it receives its European licence.
15-year-old Jess from Staffordshire, who has cystic fibrosis (CF), was due to fly to the Icelandic capital of Reykjavik for a five-day tour this month, but was forced to wave goodbye to her friends after her school ruled she couldn’t go just days before.
We sit down with Sangeeta Enright, Welfare and Rights Advisor, to talk about joining the Cystic Fibrosis Trust, helping people navigate the benefits system, and partying with Elbow!
Before Mallory Smith died age 25, she asked her mum Diane to publish her diaries, going back to her teens. When Diane looked through them after Mallory’s death she discovered a rich internal life that her daughter had recorded between hospital stays and periods of declining health. Diane has published Mallory’s diaries in a new book, ‘Salt In My Soul, An Unfinished Life’. We spoke to Diane, herself no stranger to writing about CF, about her daughter’s inspirational life and what it means to have her story published.