Talking to friends and family about your child’s CF can be challenging. It can be hard to explain the condition and how it’s impacting your family while fielding questions from well-meaning loved ones. But talking openly about CF can be really helpful. Sharing insights into the condition can help those around you understand why the treatments and medicines are so important, why your baby needs extra care, and how they can support you as you adjust to the diagnosis.
Today is International Clinical Trials Day, and we would like to take a moment to thank everyone that has supported CF clinical research over the years.
Cracking the CF Code is a resource for children aged 6–9 with CF, and was written and created by young people aged between 14 and 25 in our Youth Advisory Group. The resource provides child-friendly definitions for over 80 medical words that children with CF may hear their parents and CF team use.
This month, we saw a record number of our dedicated supporters complete the London Marathon and take on other exciting fundraising challenges for the Trust.
Wear Yellow Day is happening one month today (13 June) – and we’re so grateful to everybody who is getting involved. However you choose to fundraise, all the money raised will help change the future for people with CF. Here’s how…
The Clinical Trials Accelerator Platform (CTAP) programme is governed by the Research Scientific & Oversight Board (RSOB). The RSOB also oversees a number of different types of review services, including CTAP badging for CF clinical research studies.
Find out what the RSOB does and how they can support you.
Colleen and Mike, whose son Ewan has CF, are part of Team Ewan, which has raised an incredible £70,000 for the Trust over the years. They opened up to us about dealing with diagnosis, fundraising, and their hopes for Ewan’s future.
