Uniting for a life unlimited: Highlighting the work of our Policy and Public Affairs team on Rare Disease Day

The England Rare Diseases Action Plan for 2023 will be published today. The plan will set out how the UK Diseases Framework will be implemented in England during 2023. As part of the Patient Advisory Group, the Trust has shaped the actions for the forthcoming year.

We’ve done this by highlighting the need for wider awareness of living with rare conditions like cystic fibrosis, particularly with regards to psychosocial support and adapting welfare systems to acknowledge the life-long nature of some genetic conditions. We are also calling for every person with cystic fibrosis to have access to the best treatments and we are seeking our community’s experiences of modulator therapies to support the NICE appraisal.

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Recent research by the Trust has found that 87% of people with cystic fibrosis are worried about the cost of living and findings by the University of Bristol show that living with cystic fibrosis means families can be thousands of pounds worse off than comparable families. This is due to the combined impact of extra spending (for example, heating, expensive dietary needs, attending medical appointments) and loss of income.

We recently hosted an online briefing with Members of Parliament where they had an opportunity to hear directly from those living with cystic fibrosis, and debate in Westminster with influential lawmakers on the impact of the condition on living costs. We’re really proud that Helen Whateley MP, the Minister for Social Care at the Department of Health and Social Care, recognised the influential advocacy and campaign work of the Trust.

As part of our ongoing campaign about the cost of living with cystic fibrosis, the Trust is a key member of the Prescription Charges Coalition. We have recently met with senior members of the Health and Social Care Select Committee and discussed our call for a review of the outdated prescription charge exemption list.

At the meeting, we shared stories of those who are choosing between missing their medication or buying everyday essentials. We stressed the inherent unfairness of the exemption list which leaves many people with long-term conditions in England paying for their medicines they need to stay alive and well. Over 1,300 people in the cystic fibrosis community recently shared their views on this which will be passed directly to the government to call a review of the exemption list.

The Disability Benefits Consortium (DBC) is a national coalition of over 100 different charities and other organisations committed to working towards a fair benefits system. Using our combined knowledge, experience and direct contact with disabled people and their families, we seek to ensure government policy reflects and meets the needs of all disabled people. Cystic Fibrosis Trust and the DBC has recently been campaigning for uplift of benefits by £20 per week and to increase benefits in line with inflation.

We are also key members of the Taskforce for Lung Health, Specialised Healthcare Alliance, and the Association of Medical Research Charities (AMRC) to ensure the voices of people living with cystic fibrosis are heard across all spectrums.

We won’t stop until everyone with CF can live a life unlimited. 

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.