Cystic fibrosis support

Whatever you’re going through, we have a range of information and services to help lighten the load.

Helpline and advice

Through the Cystic Fibrosis Trust helpline we offer practical support and information for people living with CF and their families. The helpline hours are currently reduced, as follows:

Monday:            Half day              9.30am-1.30pm
Tuesday:           Full day               9.30am-4.30pm
Wednesday:      Half day              9.30am-1.30pm
Thursday:          Full day               9.30am-4.30pm
Friday:               Half day               9.30am-1.30pm

The helpline can help with a range of issues, from housing and employment to travel and holidays, or just lend an ear when you need someone to talk to who understands the ups and downs of life with cystic fibrosis.

Through our specialist benefits advice we can support you to access the benefits you could be entitled to, helping to lift some of the financial burden of living with cystic fibrosis. Our helpline team can put you in touch with our expert Welfare and Rights Advisor who can help and advise you at any stage of your benefits claim, and we can provide comprehensive information on Disability Living Allowance (DLA) and Personal Independence Payment (PIP). 

The helpline can be contacted on helpline@cysticfibrosis.org.uk or 0300 373 1000.

Grants and financial support

We can provide grants for people with cystic fibrosis to help with some of the costs associated with the condition, such as emergency grants in times of financial difficulty or for transplant assessments or funerals, or health and wellbeing grants for anything that can improve the health and quality of life of someone with cystic fibrosis, including exercise equipment, gym fees and household essentials. We also provide holiday grants for over 18s who have CF, and links to other sources of financial support.

The Helen Barrett Bright Ideas Awards help people with cystic fibrosis turn their hobbies into new businesses, providing an opportunity to turn your ambitions into reality.

Information resources

We have a huge range of information packs and factsheets on a number of issues relating to cystic fibrosis. Our information packs cover a number of subjects in depth and can be downloaded or ordered as hard copies:

• New diagnosis
• Pre-school and primary school
• Secondary school
• Family planning
• Bereavement
• Festival planning

Our factsheets cover a number of issues related to cystic fibrosis, including diagnosis, related complications like bone health and diabetes, CF treatments, nutrition, physiotherapy, the issues associated with living with CF, and preparing for transition.

Travel information

Cystic fibrosis should not be a barrier that stops you from living the life you want - including going on holidays. Make use of our information on travel and cystic fibrosis. You may also be interested in our travel insurance information, including companies that cover people with pre-existing conditions, and some helpful pointers to consider.

Connecting with others

We know cystic fibrosis can sometimes be an isolating condition. You can share your experiences and concerns with other members of the CF community by joining our social network on Twitter, Facebook and our Forum.

For parents and families of children with CF we can put you in touch with a trained parent volunteer who can share their experience of life with a child who has cystic fibrosis through our CF Connect scheme.

If you need anything else, get in touch with our helpline by email or call us on 0300 373 1000, or explore our website for more information.