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Action for Pulmonary Fibrosis

Learn about our support groups, education initiatives, research efforts, and campaigning activities to improve the lives of those with Pulmonary Fibrosis. Join us today!

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Action for Pulmonary Fibrosis

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  1. Action for Pulmonary Fibrosis News Lorna McLauchlan Support Group Co-Ordinator Doncaster October 2018

  2. Our Vision A world in which everyone living with Pulmonary Fibrosis has a better future: Supporting Educating Researching Campaigning.

  3. How are we supporting Patients? Support groups Support line Education VOPC Research Campaigning

  4. Support Groups Support groups are a gathering of people who share common experiences, situations, problems or conditions Share Learn Friendship

  5. 65 Support Groups in UK Vision To have a support group for every patient in the UK within an hour of their home

  6. Support Line

  7. Support Line • Run by ILD nurses and patient ambassadors • Six month pilot phase with voicemail messages and call back • If sufficient demand will staff phones 6 hours/day, 6 days a week • Not an urgent or emergency medical helpline but can give advice on a range of topics affecting patients and carers

  8. Education • In partnership with ILD INN • Developed education sessions for nurses • 500 participants so far • Drug Leaflets (Pirfenidone and Nintedanib) • Professional and patient information leaflets • Website information

  9. EducatingWhy didn’t my GP and nurse know more about pulmonary fibrosis?

  10. Voice of the Patient Council Listen to patient views Patient survey Guide our work Inspire new developments

  11. Mike Bray Research Fellowship Mike Bray – Founding Chair and Inspiration £300,000 for research Cause New treatment Improve lives

  12. Campaigning and Awareness MP Angela Raynor (Ashton-Under Lyne) MP Stephen MacPartland (Stevenage)

  13. Awareness and Campaigning • MPs and government • Radio • Newspapers • Community events • Conferences • Social events • Partnership working (BTS, Pharma, EU-IPFF, ILD INN, other charities) • IPF week

  14. Campaigning and Awareness

  15. Campaigning for……. • Campaigning for …… • Implementation of NICE guidelines/Quality Standards • A registry of all patients diagnosed with IPF • Anti-fibrotic drugs 80% rule • Through……. • NHS senior management • UK Parliament All-Party Groups on Respiratory Health and Rare Diseases • Scottish Parliament Cross-Party Group on Lung Health • European IPF Federation (13+ countries) and European Parliament

  16. Supporting APF during IPF World Week

  17. The Stars come out for APF!Gok Wan and West End star Becky Herszenhorn

  18. Our Amazing Fundraisers

  19. What have we all achieved? 2018 YES • 65 PF Support Groups • NICE IPF Guidelines/Quality Standards • Pirfenidone + Nintedanib • PR and oxygen therapies • Specialist centres + MDTs • Action for Pulmonary Fibrosis • PFT + BLF Priority Area. 2010 NO • Local support groups • NICE IPF Recommendations • Positive Clinical Trials • Approved therapies • Specialist networks

  20. Climb Every Mountain

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