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Cystic Fibrosis Trust

Aged 11-25? We've started a digital space for you to have your say on how cystic fibrosis (CF) affects you. Parents, teachers and doctors have plenty to say on the matter; now’s your chance to be heard!

There are plenty of ways to get involved with the Trust and help other young people with CF. Here are some current opportunities that you might find interesting:

University application support 

Are you struggling with your UCAS personal statement? We invited staff from Suffolk University to run a digital personal statement workshop on Google Hangouts to help you make your UCAS application stand out.

Did you miss the UCAS webinar? Not to worry, Karen Hinton who delivered the presentation, has kindly sent over the PowerPoint to be shared with those unable to make it. There’s lots of really useful tips and guidance on what universities are looking for in a winning personal statement.

We have many more workshops like this planned and we do hope you will participate in the future, keep an eye on our social media for updates or just drop Bahar Mustafa an email!

Mental health and cystic fibrosis

“50% of mental health problems are established by age 14 and 75% by age 24. 10% of children and young people (aged 5-16 years) have a clinically diagnosable mental problem, yet 70% of children and adolescents who experience mental health problems have not had appropriate interventions at a sufficiently early age.” - Mental Health Foundation, 2017

Mental health is being talked about more and more, with today’s generation of young people exhibiting concerns with their own mental health and wellbeing. Because CF and CF-related conditions effect people in such a varied way, we are discovering that CF mental health conditions impact the lives of many young people with CF but are not always prioritised in the way that physical symptoms are, and might therefore be neglected. But our mental health is important! If we’re not being kind to our minds, then it can make being kind to our bodies more challenging.

We're putting together discussions on mental health for a new three-year project to run practical and interesting workshops and courses for 10-18 year olds with cystic fibrosis. If you would like to be on the mailing list to keep up to date with future events, please email Bahar Mustafa, Digital Youth Outreach Officer at the Trust.

In the meantime, we've put together a list of resources if you would like to find out more about mental health support.

Get supported

Get social

Researching mental health

If mental health is important to you, the Trust is currently working with University College London and Great Ormond Street Hospital on a huge research project that is investigating what it’s like to be a young person with CF today. We are looking for participants from all over the UK in the following demographics:

  • People with CF under 25
  • People with CF over 25
  • Siblings of young people with CF
  • Parents of young people with CF

If you would like to get involved with this ground breaking research and share your story please email Holly-Rae Smith, Youth Empowerment Officer at the Trust, for more information.

Youth Advisory Group

We are always looking for people to be part of our Youth Advisory Group, a way for young people to influence work at the Trust and ensure that the voices of young people with CF are heard. YAG is made up of young people aged 14-25 who are living with CF or close to someone living with CF.