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!
In October, the eyes of the CF research community turned to Denver, Colorado, as scientists and CF professionals from around the world converged on the Mile High City for the North American Cystic Fibrosis Conference (NACFC). Sara Cuevas Ocaña and Dr Vinciane Saint-Criq from Dr Mike Gray’s Trust-funded Strategic Research Centre in Newcastle both won prizes that meant they were able to go along to the conference, and to share their top takeaways from the event with us.
With just a week to go until the #QuestionCF survey closes, Keith Thompson, Specialist Pharmacist at the Royal Brompton Hospital, talks about the James Lind Alliance Priority Setting Partnership and the vital role people with cystic fibrosis have to play in shaping research.
NHS England announces provisional funding for transformational precision medicine for children age two to five with rare CF mutations, mounting pressure on the other UK nations to follow suit.
