Speaking out on IPF in parliament - Lung Conditions C...

Lung Conditions Community Forum

56,238 members66,863 posts

Speaking out on IPF in parliament

kevinrobinson profile image
3 Replies

Recently, we held an event in parliament to raise awareness of IPF among MPs and parliamentarians.

Ron Flewett has IPF and he came along to talk to MPs about the condition. He's now told his story of the day on our blog. It's a really interesting read - check it out and let me know what you think!

blog.blf.org.uk/2014/07/spe...

Written by
kevinrobinson profile image
kevinrobinson
To view profiles and participate in discussions please or .
3 Replies
jenss profile image
jenss

Well done! And thank you very much to Ron and others for helping to raise much needed awareness of this horrible devastating disease!

DozyDormouse profile image
DozyDormouse

Thank you and well done. Just wish I could be included in getting the word out and showing the progression. On oxy 24/7. Dozy :)

RFPM profile image
RFPM in reply toDozyDormouse

Hi Dozy, if you would like to help there may be a few ways that you can get involved from home. You can write to your MP and tell him about IPF, we can send you a template letter. Also if you like, you can tell us your experiences over the phone as we always need people's stories for our website and sometimes for journalists. If you are interested in either of these then please let me know. You can contact me through patientvoice@blf.org.uk. Thanks, Ruth (IPF project manager at the BLF)

Not what you're looking for?

You may also like...

Parliamentary activity on IPF

We held a parliamentary meeting earlier this month. MPs met people with IPF and their carers to...
RFPM profile image

IPF

Hi, I am 73 years of age and new to the forum, and have IPF, finally diagnosed in April 2018 I had...
Tattyoldgit profile image

IPF - Acute Exacerbation in UK

Can anyone from UK help me out with following question about acute exacerbations in IPF?. I live...
Salmo profile image

IPF issues.

IPF and Baggy Oesophagus ,does anyone know or have baggy Oesophagus ,went for my transplant...
Sooki profile image

IPF news

I had a notification from Pulmonary Fibrosis News with a new treatment for IPF, here is the link...
Suzie42 profile image

Moderation team

See all
AsthmaandLung profile image
AsthmaandLungAdministrator
Claire_ALUK profile image
Claire_ALUKAdministrator
moderator_AandLUK profile image
moderator_AandLUKAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.