On Rare Disease Day, 28 February, we would love you to get involved and show your support for IPF on social media!
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.
What is a Rare Disease?
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
Where is IPF on this scale?
IPF kills 5,000 people in the UK every year but it doesn’t have a high profile and is poorly understood. The cause is unknown (idiopathic) and life expectancy is often worse than for lung cancer with more than half of sufferers dying within three and five years of diagnosis.
(Idiopathic) Pulmonary Fibrosis or ‘IPF’ is the most common form of pulmonary fibrosis.
It is estimated that more than 30,000 people in the UK are affected although there is a huge issue around data collection of IPF patients and this figure could be even larger.
What challenges does IPF face as a rare disease?
- Lack of knowledge around 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 are Action for Pulmonary Fibrosis doing about these issues?
We work hard to raise awareness of IPF 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. The federation is a powerful patient advocacy group that has addressed the European Parliament on issues relating to equality of access to therapies and research funding for IPF.
We have a strong online presence for anyone who searches for IPF; our website has a wealth of useful and practical information and our social media pages on Facebook and Twitter reach thousands of people daily.
We support research activities and recently announced The APF Mike Bray Research Fellowship – a £300,000 grant to fund a major IPF research project.
As part of our commitment to education, in 2017 we trained over 350 health professionals on how to diagnose patients with pulmonary fibrosis early and accurately. In 2018 we will significantly 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.
Since our charity began in 2013 we have helped to grow the number of dedicated pulmonary fibrosis support groups from around 4 to 50 in the UK. These provide emotional support and education for patients and carers and give APF unique access patients and families so we can listen to and learn from them about what they need.
How can you get involved?
Help us on Rare Disease Day by sharing our messages on social media and updating your social media profile pictures!
Use our temporary Facebook Frame to update your profile picture and show your support! Go to our Facebook page and you will see links to change it in the pinned post at the top of the page.
We’ve created a temporary frame for you to put on top your existing profile picture on Twitter and Facebook to show your support for IPF on Rare Disease Day.
Please support our Twibbon campaign by clicking on our campaign link here https://twibbon.com/support/rare-disease-day-ipf and upload your temporary Twibbon (don’t worry you can easily change it back to the original!)! Make sure you include a message of support! You can also use it on Facebook too!