The aim of the Pulmonary Fibrosis Trust is to provide personal support to people affected by Pulmonary Fibrosis, a very debilitating and life-limiting illness.
We offer practical, emotional and financial support where there is a need. We also raise awareness of the illness and in particular the challenges people face on a daily basis.
The Pulmonary Fibrosis Trust was founded by patients who experienced a lack of information and support upon their own diagnosis, and therefore, wanted to support others through this process.
We are here to support all those affected by pulmonary fibrosis, whether you are a sufferer or have a loved one with pulmonary fibrosis.
Support we can provide
Whether you call, email or connect with us via social media, there will always be an understanding, listening ear.
Many of our trustees have pulmonary fibrosis themselves and are always willing to provide emotional support by listening and sharing experiences, such as, journey to diagnosis and treatment options. Speaking with someone who is going through a similar journey can be extremely beneficial, they can fully understand your questions, uncertainties and worries.
The Pulmonary Fibrosis Trust can provide funding for essential equipment to support sufferers in gaining their independence. Previously, funding has been provided for equipment such as additional batteries for portable oxygen concentrators, wheelchairs, mobility scooters and stairlifts.
Our dedication to supporting patients continues by raising awareness of pulmonary fibrosis, increasing understanding in primary care and the wider public.
The Pulmonary Fibrosis Trust sits on the Taskforce for Lung Health, ensuring a continuous patient voice. We also attend many respiratory educational conferences and share knowledge and experiences with other respiratory organisations.
The Pulmonary Fibrosis Trust contributes to research projects that affect how people can cope with the effects of Pulmonary Fibrosis. An example of this is a project aimed at improving the pulmonary rehabilitation course offered to people suffering with Pulmonary Fibrosis. Other areas that we feel need more research are:
- Improvements into portable oxygen concentrators to enable more people to live a more active life
- Improvements into monitoring of vital signs for people suffering from pulmonary fibrosis so that people and medics can learn more about the various episodes that affect people
There is a strong pulmonary fibrosis community sharing experiences and providing support.
As a part of the community, the Pulmonary Fibrosis Trust has a platform available to all to raise awareness and provide support to each other.
Make sure you follow us on social media and join our PF Trust Community mailing list. We welcome stories, experiences and tips and share these with the community via our newsletter.
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