Publications

New diagnosis – information for parents

A series of resources to help families who have just found out that their child has cystic fibrosis. Download our guide for new parents or take a look at all of our information about newborn diagnosis.

Download new diagnosis parent information pack (2024)

Late diagnosis

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.

Download late diagnosis factsheet

Sweat test

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.

Download the sweat test for cystic fibrosis factsheet (2023)

Cystic fibrosis and bone health

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.

Download cystic fibrosis and bone health factsheet

Cystic fibrosis diabetes (CFD)

Cystic fibrosis diabetes (CFD) 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 CFD should expect.

Download cystic fibrosis diabetes factsheet (2023)

Cystic fibrosis-related liver disease

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.

Download cystic fibrosis-related liver disease factsheet

Melioidosis and worldwide travel

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.

Download melioidosis and worldwide travel factsheet

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.

View physiotherapy leaflets

Non-tuberculous mycobacteria (NTM) in cystic fibrosis

Non-tuberculous mycobacteria (NTM) are a group of closely-related bacteria that includes Mycbacterium abscessus. Read about how NTM lung infections might be diagnosed and treated, and about the research on NTM that the Trust is involved in. 

Download the non-tuberculous mycobacteria factsheet (2023)

We've 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.

View nutrition leaflets

Kaftrio – complex and individual experiences

This factsheet has information for people with CF and their families, whether they are taking Kaftrio or not. It includes information about dealing with mixed emotions, managing changes, the reactions of family and friends, and other possible impacts of Kaftrio.

Download our Kaftrio factsheet (2024)

Home intravenous (IV) therapy

People with cystic fibrosis may sometimes need to have treatment with IV antibiotics. Some people have IVs in hospital, while some do them at home. This factsheet explains how home IV therapy works, and lists the advantages, disadvantages and other considerations for having IV antibiotics at home.

Download our home IV therapy factsheet (2022)

Inhaled therapy

Inhaled antibiotics are a common part of the cystic fibrosis treatment regime. This factsheet gives information on the different types of nebulisers available, how to look after your nebuliser and the types of medications that can be nebulised.

Download our inhaled therapy factsheet (2023)

Steroid treatment

This factsheet has 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.

We are aware that this information resource is due for a review and update,and we are working on it. Please be assured that the information is still accurate and reliable.

Download our steroid treatment in cystic fibrosis factsheet

Portacaths

A portacath, or port, is a small medical device that sits under the skin to easily deliver medication into the body. This factsheet answers some common questions people have about using portacaths in CF.

Download our factsheet on the use of ports in cystic fibrosis (2022)

MT-RNR1 testing

Aminoglycosides are a group of antibiotics used to treat certain infections. Hearing loss is one possible side effect that may be caused by aminoglycoside antibiotics. There is a test called the MT-RNR1 test that looks at your DNA to check if you have a variant (mutation) in the MT-RNR1 gene that means you are at an increased risk of experiencing hearing loss with aminoglycoside antibiotics. Find out more in our factsheet about MT-RNR1 testing for increased risk of aminoglycoside hearing loss and why this test can be useful for people with CF.

Download our factsheet on MT-RNR1 testing (2023)

Find more treatments information

Our clinical trials booklet (2024) 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!

Download clinical trials booklet (2024)

We also have a children’s comic (2020) to introduce the topic of trials to primary aged children and a leaflet for teenagers (2020) to find out more. We also have a leaflet of tips for parents (2020).

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.

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.

Body image and cystic fibrosis booklet

We've worked with people with cystic fibrosis (CF), their families and CF and transplant clinicians to create three booklets on transplant:

• A transplant booklet for people with CF who want to find out more about transplant or are already actively involved in some stage of the transplant process.
• A booklet for partners and families of people with CF going through the transplant process.
• A booklet for families and carers of children with CF who are going through the transplant process.

Find more transplants information

CF: What's it all about?

We've put together a film and activities to help children understand a bit more about CF, a condition that affects over 4,000 children in the UK.

Take a look at our information about CF for children (2022) 

Children's books

Our two children’s books are written for children who have a parent with cystic fibrosis. Watch animated versions of both books here.

• Seb’s Best Game children’s book
• The Lost Collar Investigation children’s book

Resources for young people

Our 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

Resources 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.

Download our information for families and carers (2020)

Pre-school and primary school

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.

Check out our pre-school and primary school information

Individual healthcare plan for preschools and primary schools

Download a template Individual Healthcare Plan to help plan your child's care with their school.

Individual healthcare plan for preschools and primary schools

Secondary 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.

 Take a look at our secondary school information

Download our individual healthcare plan My CF Planner

Leaving school

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.

Have a look at our information about leaving school

Employment

We want to empower everyone with cystic fibrosis to live without limits, which means supporting the CF community with your career goals and aspirations. For information about working when you or someone you care for has cystic fibrosis, visit our Work Forwards programme pages.

Work Forwards programme  

Guide for those thinking of starting a family

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.

Download Thinking of starting a family? A guide for adults with cystic fibrosis and their partners

Carrier testing

Carrier testing is a type of genetic test to find out if you have a variant in one copy of the CF gene and are a carrier of CF. 

Download carrier testing factsheet (2024)

Carrier testing GP letter

If you are having difficulty getting carrier testing for CF, this letter contains information for GPs to support access. You can forward this letter to your GP or take it with you to your next appointment.

Download GP letter (2023)

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.

Have a look at our festival planning information

Applying for Disability Living Allowance (DLA)

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.

Download our hints and tips for completing the DLA form

Personal Independence Payment (PIP) face-to-face assessments

Tips and guidance to help support you with the face-to-face assessment for Personal Independence Payment (PIP).

Download our PIP face-to-face assessments factsheet (2021)

Personal Independence Payment (PIP) telephone assessments

Tips and guidance to help support you with the telephone assessment for PIP.

Download our PIP telephone assessments factsheet (2021)

More financial support

If you are in need of financial support, take a look at how we can support you here. 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. 

Financial support

We've 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.

Have a look at our end of life planning information

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. 

• Losing someone to cystic fibrosis: coping with bereavement
• Supporting a child bereaved through cystic fibrosis
• Bereavement: losing a child of any age to cystic fibrosis

Find more bereavement information