Take a look at our in-depth information packs and our briefer factsheets and leaflets which cover a whole range of issues that can affect people living with cystic fibrosis (CF).
We have information packs, booklets, factsheets, leaflets and more that cover a number of topics, ranging from issues surrounding diagnosis and screening to support with housing and prescription charges.
For more information, or to order any of our information packs, please contact our helpline.
You might also like to browse our information resources catalogue.
Explore our information:
- Body image
- CF-related conditions
- Education and work
- End of life planning
- Family planning
- Festival planning
- Money and benefits
- Moving from paediatric to adult care (transition)
- Resources for children
- Taking part in clinical trials
- Treatments, therapies and care (including physiotherapy)
We have three resources for supporting you if you have lost someone to cystic fibrosis, including information for children and support for parents who have lost a child of any age to cystic fibrosis.
Body image and cystic fibrosis booklet
Our body image booklet explores body image issues people with CF have told us they can struggle with, and provides support and advice for dealing with these issues.
Cystic fibrosis-related conditions
Cystic fibrosis and bone health factsheet
In people with cystic fibrosis, thinning of the bones can occur at an earlier age than in the general population. This factsheet describes how bone health can be affected in cystic fibrosis and the implications of this, how bone strength is measured, and options for prevention and treatment of thinning bones.
Cystic fibrosis-related diabetes factsheet
Cystic fibrosis-related diabetes (CFRD) is common in adults and adolescents with cystic fibrosis. This factsheet explains what diabetes is and why it can be associated with cystic fibrosis, and the care and treatment someone with CFRD should expect.
Cystic fibrosis-related liver disease factsheet
Liver disease in people with cystic fibrosis can be related to problems with the drainage of bile out of the liver via the bile ducts and gallbladder or also to scarring in the liver known as fibrosis and cirrhosis.
Melioidosis and worldwide travel factsheet
Melioidoisis is a rare but potentially life-threatening infection that can be contracted in some tropical countries. This factsheet contains advice on how to reduce your risk of contracting the infection if travelling to a country where meliodosis is present.
New diagnosis parent information pack
A series of resources to help families who have just found out that their child has cystic fibrosis. You can order our new diagnosis pack by filling in the order form on the new diagnosis page.
Friends and family guide
A flyer to share with friends and family to help them better understand cystic fibrosis and your child's diagnosis.
Late diagnosis factsheet
This factsheet contains information about cystic fibrosis aimed at people who weren't diagnosed with the condition at birth. It features quotes from people with CF and their families who have experienced late diagnosis.
The sweat test for cystic fibrosis factsheet
Sweat tests can be used to help rule out or diagnose cystic fibrosis. This factsheet provides information on the sweat test, how it works, and why it is used.
Education and work
Pre-school and primary school pack
This pack provides information about all aspects of attending pre or primary school with cystic fibrosis, with information for both teachers who have a pupil with cystic fibrosis, and for parents whose children with CF are just starting school, changing schools or have a new teacher.
Individual healthcare plan for pre and primary schools
Download a template Individual Healthcare Plan to help plan your child's care with their school.
Find out more about secondary school and how you can develop a planner to inform your teachers about you and your cystic fibrosis. We've also created a secondary school magazine for young people, and a pack for parents and teachers. In the parents pack, you can use our helpful checklist and the 'Ask the psychologist' section to help plan for your child's move to secondary school. You can order our secondary school pack by filling in the order form on the secondary school page.
Use our brand new individual healthcare plan called 'My CF Planner'.
Read our leaving school booklets for young people with CF and their friends and families, and download our booklet for training providers, colleges and universities. We've also created an animation all about how to choose your options after leaving school.
Information about work and having cystic fibrosis. Also includes details of organisations that can support with discrimination.
End of life planning
End of life planning
We have created a guide for end of life planning for people with cystic fibrosis, with practical information to help anyone who wants to ensure their wishes at the end of their life and following their death are noted.
Thinking of starting a family? A guide for adults with cystic fibrosis and their partners
Find out more about the considerations involved when deciding whether or not you'd like to start a family if you or your partner have cystic fibrosis.
Family genetic testing: The family cascade screening programme for cystic fibrosis factsheet
A guide to the family cascade screening programme for cystic fibrosis.
Festival planning information
Attending a festival can be an exciting time for people of any age. We've put together some useful advice on staying safe and healthy at a festival if you have cystic fibrosis.
Money and benefits
Completing the DLA form: Hints and tips factsheet
Find out more about applying for DLA if you have cystic fibrosis or if you have a child with cystic fibrosis (if they are under 16). This factsheet focuses on completing the claims form in relation to care needs.
Guidance for PIP: Face-to-face assessments factsheet
Tips and guidance to help support you with the face-to-face assessment for Personal Independence Payment (PIP).
Guidance for PIP: Telephone assessments factsheet
Tips and guidance to help support you with the telephone assessment for PIP.
If you are in need of financial support, take a look at our webpage to find out more about how we can support you. We provide a range of grants for people with CF and their families and support for those applying for benefits, as well as information about other resources.
Moving from paediatric to adult care (transition)
Transition to adult care: resources for young people
The transition resources for young people include:
- A transition booklet full of useful information and quotes from other young people with CF
- Tips and ideas for a smooth transition
- Questions to ask your old and new teams throughout your transition
- A transition checklist of things you might want to do during your move
- My adult CF team template to fill in the details of your new team
Transition to adult care: guide for families and carers
This booklet provides information for parents on what to expect and how to prepare when their child with CF moves from paediatric to adult care.
We have worked with dietitians from the Cystic Fibrosis Dietitian Group UK (CFDGUK) to create this series of leaflets, which have information about different aspects of nutrition for people with cystic fibrosis. These include information on achieving a healthy weight, calcium and bone health, eating well for children, iron, salt, vitamins, nutrition and pregnancy and more. You can view all of our nutrition leaflets here.
We have worked with the Association of Chartered Physiotherapists in Cystic Fibrosis (ACPCF) to produce a series of leaflets to complement the advice and teaching physiotherapists give people with cystic fibrosis. These include information on how to improve your posture, bubble positive expiratory pressure (PEP), airway clearance, pelvic floor exercises, how to use your PEP mask and more.
Resources for children
Taking part in clinical trials
Our Clinical Trials booklet gives a detailed look at many aspects of clinical trials - what they are, why they’re so important, what taking part might involve and much, much more!
We also have a children’s comic (3.35MB) to introduce the topic of trials to primary aged children and a leaflet for teenagers (752KB) to find out more. These are supported with ‘Tips for Parents’ leaflet (764KB) too.
All of our resources have been created with the help of people living with CF and parents of children who have taken part in trials.
We worked with people with CF, their families and clinicians to create three booklets on transplant. One booklet is for people with CF going through the transplant process, one is for partners and families of people with CF, and the other is for families and carers of children with the condition.
Treatments, therapies and care
Emotional and social impact of Kaftrio
This factsheet addresses some of the impacts of Kaftrio, for those who are eligible for the treatment as well as those who will not be able to benefit from it. It includes information about dealing with mixed emotions, managing physical changes, the reactions of family and friends, and other possible impacts of the new treatment.
Home intravenous therapy factsheet
This factsheet addresses some questions you may have about home intravenous antibiotic treatment for treating cystic fibrosis and compares the advantages and disadvantages of home IVs compared to those given in hospital.
Inhaled therapy for people with cystic fibrosis factsheet
Inhaled antibiotics are a common part of the cystic fibrosis treatment regime. This factsheet provides information on the different types of nebulisers available, how to look after your nebuliser and the types of medications that can be nebulised.
Steroid treatment in cystic fibrosis factsheet
This factsheet contains information on steroid treatment in cystic fibrosis, including the different types of steroids, what they are used for, how they are given and their possible side effects.
The use of ports in cystic fibrosis factsheet
A portacath (port) is a totally implantable venous access device (sometimes called a TIVAD for short), which is placed under the skin and is a means of delivering medication to the body easily and effectively. This factsheet provides answers to some common questions people have about portacaths and cystic fibrosis.
We have plenty of publications about living with cystic fibrosis, from factsheets by clinicians to our bi-annual 'is' magazine, featuring real-life stories.
There's loads of support available for people with cystic fibrosis and their families, from grants to help with benefits.
Researchers are investigating a range of issues related to cystic fibrosis, from transplants to bacterial infections and gene therapy.