01709 210151 / 07716 135940 kerry.leeson@alstrom.org.uk

Cystic Fibrosis Trust

Name of Organisation: Cystic Fibrosis Trust

Address: Cystic Fibrosis Trust, Second Floor, One Aldgate, London, EC3N 1RE

Telephone Number: 020 3795 1555

Email Address: enquiries@cysticfibrosis.org.uk

Website: https://www.cysticfibrosis.org.uk/

Registered Charity Number: SC009443 

Prevalence of Condition (if applicable):  1:17,000 

What is Cystic Fibrosis?

Cystic fibrosis is the UK’s most common life-limiting genetic condition. It affects 10,500 people and is caused by a faulty gene known as ‘CFTR’. The gene and the protein it makes control the movement of salt and water in and out of cells. When the gene is faulty, it can cause thicker mucus that clogs the internal organs. This leads to increased susceptibility to chronic infections, inflammation in the lungs and difficulties with digesting nutrients.

What support is available? 

The Cystic Fibrosis Trust is the only UK wide charity dedicated to fighting for a life unlimited for everyone affected by cystic fibrosis.

The Cystic Fibrosis Trust’s mission is to create a world where being born with cystic fibrosis (CF) no longer carries a life-long burden, and where everyone living with the condition can live a long and healthy life. To reach this goal, we:

  • Invest in cutting edge research into CF and the development of new treatments
  • Drive up standards of care by working closely with the CF clinical community
  • Campaign for equal access to disease modifying therapies
  • Provide information, advice and support to everyone affected by CF through our free helpline, welfare grants programme, information resources and peer support services.

We sit at the heart of the cystic fibrosis community with strong links to families affected by CF, clinics, specialists, national and international researchers and commissioners.

Breaking Down Barriers project overview

The Cystic Fibrosis Trust will run three projects to improve the organisation’s understanding of the needs of people and families affected by cystic fibrosis (CF) from minority ethnic backgrounds:

  • Project 1: Scoping the need for targeted information and support resources for people with cystic fibrosis from minority ethnic backgrounds with a view to developing targeted information and support resources to meet those needs. The project will involve carrying out consultations with families affected by cystic fibrosis alongside analysing data on uptake and access to our support services for people from BAME groups.

 

  • Project 2: Collecting Patient Reported Experience Measures (PREMs) from people with cystic fibrosis, including those from minority ethnic backgrounds, in order to gain an insight into their experiences of clinical care. The first phase of the project will focus on collecting data from paediatric CF centres in the UK.

 

  • Project 3: Supporting the establishment of an Indian Cystic Fibrosis Registry. The Trust has been approached by a partner to provide guidance, advice and support to a project to create a Cystic Fibrosis Registry in India. This project is not being funded by Breaking Down Barriers but learning from the programme will enhance our understanding of the needs of people with CF from minority ethnic backgrounds and could provide useful knowledge to the BDB network.