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Do you or someone you love have lung scarring? Action for Pulmonary Fibrosis (APF) want to hear from you

National

Pulmonary fibrosis is a type of lung scarring, where the lungs become stiffer and smaller, eventually leading to lower oxygen levels in the blood. This can be caused by a range of other conditions, including asbestosis, rheumatoid arthritis, and scleroderma. However, it is often unclear what the cause might be, as is the case for idiopathic pulmonary fibrosis (IPF).

Action for Pulmonary Fibrosis (APF) are looking to design and expand their research involvement network and would love to do this by hearing the voices of those who have been affected by lung scarring or pulmonary fibrosis. APF want to run a small discussion group to talk about their current work, but more importantly, to hear your views about what you might like to get involved in, so that APF can build an involvement network which ensures that research meets the needs of everyone affected by pulmonary fibrosis.

They are looking for:

  • Anyone who has been affected by lung scarring or pulmonary fibrosis (as a patient, carer, family member, loved one) AND
  • Anyone who would like to share their views about research and their thoughts about getting involved in research (it does not matter if you have not had any experience with research, or if you have had positive or negative experiences with research in the past

Expected commitment from participants:

The provisional date for a small discussion group is Monday 11th March 2024 from 10am to 12:30pm, however there is flexibility around this date. The discussion will be online and will be informal.

Even if you are unable to attend the discussion group but are interested in finding out more about pulmonary fibrosis research, APF would love to hear from you.

APF are committed to creating a research network that reflects the diverse views of the entire pulmonary fibrosis community, so they would love to hear from people from a range of different ethnic backgrounds, age groups, genders, and religious beliefs.

Commitment to inclusion:

The discussion will be online, so all you would need to access the discussion group would be an electronic device, such as a phone or computer, and access to the internet.

The discussion group will be informal and APF will ensure that there are comfort breaks during the session. APF will encourage you to take part in the discussion, but there is no pressure to contribute. Please share as much or as little as you feel comfortable doing.

Closing date: 8th March 2024

If you apply for this opportunity please let the organisers know that you found it via Shaping Our Lives. Thank you!

How to Apply

If you are interested in this discussion group or would like to hear more about getting involved in pulmonary fibrosis research, please contact involvement@actionpf.org If you would like to find out more about pulmonary fibrosis research generally, please visit APF’s website: https://www.actionpf.org/research/our-research

Involvement Payment Details

Unfortunately, we are unable to offer reimbursement for involvement time in this opportunity.