What is Rare Disease Day?
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Pulmonary Fibrosis is not a rare disease
Pulmonary fibrosis kills 6,000 people in the UK every year but it doesn’t have a high profile and is poorly understood. In the UK around 70,000 people or 1 in 930 have pulmonary fibrosis with half suffering from IPF, which has no known cause or cure. It is not a rare disease. It is under-recognised and under-resourced and so may face some of the same challenges as rare diseases. Life expectancy is often worse than for lung cancer with more than half of sufferers dying within three years of diagnosis.
Pulmonary fibrosis has a low public profile with the following challenges:
- Lack of medical understanding of the causes of the disease
- Lack of research to find causes and better treatments
- Low awareness with the public and policy makers
- Feelings of isolation for patients and family members
- Lack of support options available
What is Action for Pulmonary Fibrosis doing about these issues?
We work hard to raise awareness of pulmonary fibrosis amongst the general public, healthcare professionals, policy-makers and parliament. We are a founding member of the General Assembly of the EU-IPFF (European IPF Federation), which represents the interests of IPF patients from 12 European countries.
We have a strong online presence for anyone who searches for pulmonary fibrosis; our website has a wealth of useful and practical information and our social media pages on Facebook and Twitter reach thousands of people daily.
Action for Pulmonary Fibrosis is a leading funder of research into pulmonary fibrosis. We support research activities and at the end of 2018 were delighted to announce two exciting research grants. Dr Richard Allen will investigate the genetic causes of IPF and Dr Philip Molyneaux the impact of lung bacteria on the disease and the potential use of antibiotics. The studies are expected to lead to the development of new treatments. The research will cost a total of £580,000, funded entirely from the generous donations and money raised by supporters of APF. The projects will run for three years. Read more about both projects.
As part of our commitment to education, each year we train hundreds of health professionals on how to diagnose patients with pulmonary fibrosis early and accurately. We continue to invest in this area to expand our nurse study session programme to reach even more health professionals across primary and secondary care, giving them access to specialists and expert information on how best to care for patients living with pulmonary fibrosis. Find out more.
Since our charity began in 2013 we have helped to grow the number of dedicated pulmonary fibrosis support groups from around 4 to almost 70 in the UK. These provide emotional support and education for patients and carers and give APF unique access to patients and families so we can listen to and learn from them about what they need. Find your local support group.
Pulmonary fibrosis is a forgotten not rare condition, and desperately needs more awareness. Share our posts and tweets on #RareDiseaseDay
Interested in fundraising for APF? Have a look at our fundraising page for inspiration www.actionpulmonaryfibrosis.org/fundraising