Celebrating 6 years of making a difference to patients and families with Pulmonary Fibrosis
Action for Pulmonary Fibrosis (APF) was set up in 2013 by a group of patients, family members and healthcare professionals to provide support for patients and families. We are now the largest dedicated UK charity supporting families and funding research into the causes and treatment of pulmonary fibrosis.
Being told you have pulmonary fibrosis is devastating. Pulmonary fibrosis is an umbrella term for around 200 lung diseases, the most common being idiopathic pulmonary fibrosis (IPF). There are around 70,000 people with pulmonary fibrosis in the UK, of whom half have IPF the most aggressive form of the disease. Life expectancy is just 3-5 years. There is no cure. This is why we exist.
We believe, now more than ever that we are well placed to build on our successful start in 2013 to meet the growing needs of patients and their families. We believe a world where people no longer die from pulmonary fibrosis is possible.
It’s been a good time to reflect on achievements to date and assess what else needs to be done to bring about the biggest improvements to the lives of people affected by pulmonary fibrosis.
Since APF was formed we have:
- Helped nearly 70 support groups to establish and operate across the UK with more planned in the future so that families do not feel alone
- Set up a telephone support line and website to provide growing numbers of patients and their families access to the information they need
- Educated 500 GPs and nurses about pulmonary fibrosis over the past two years through on-going expert-led study sessions across the UK
- Campaigned for improvements in NHS care for patients by collecting evidence and lobbying NHS management and politicians. In recent months we have published our 2018 Patient Survey: Giving Patients a Voice which has featured in three national papers reaching over 7 million readers across the UK
- Collaborated with specialist organisations dedicated to improving the care and life expectancy of people with pulmonary fibrosis, including the British Lung Foundation, the British Thoracic Society, and the Interstitial Lung Disease – Integrated Nurse Network (ILD-INN).
- Helped found the EU-IPFF (the European IPF & Related Disorders Federation), a group of 17 patient organisations across Europe, improving the quality of life and prognosis for IPF patients
- Funded research, including two major fellowships investigating the causes of and treatments for IPF with the ultimate aim of finding a cure for the disease.
Going forward APF is committed to making the biggest difference to people’s lives in the following ways:
1. Better treatments and a cure – faster
2. Faster and more accurate diagnosis and care
3. Families who are better informed and supported to live well with pulmonary fibrosis
4. Quality public services and a nation more aware of pulmonary fibrosis
5. Here for as long as it takes; sustainable and well run
APF continues to hold a unique position as the voice of patients and families affected by pulmonary fibrosis in the UK.
An enormous thank you, to the many bereaved families and families currently affected by PF who run, cycle and bake for APF. Your talents and commitment inspire and motivate us to keep on going.
We thank everyone who has supported our work, past and present. Together we will find a cure and ensure everyone affected by pulmonary fibrosis has a better future.