Steve Jones
@ActionPFsteve
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Trustee of @ActionPFcharity, a patient organisation committed to supporting people living with pulmonary fibrosis. Board member of @EU_IPFF
United Kingdom
Joined October 2017
Quietly remembering over 8,000 people who died of pulmonary fibrosis in 2024, including DJ Johnnie Walker, Indian musician Zakir Hussain and patient advocate Maggie Bartlett. As the year comes to an end, our thoughts are with them and their families. @ActionPFcharity #StopPF
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RT @TreviThera: Our Phase 2a RIVER trial in patients with refractory chronic cough has completed enrollment. We look forward to releasing t….
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RT @atzouvelekis: Excellent lecture by Sara Tomassetti paving the way for better understanding ILAs #ICLAF2024
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RT @KaminskiMed: So proud of Prof Lindell, who's giving the first Dan Rose Memorial Lecture at #ICLAF2024 - Dan was an amazing patient advo….
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RT @KaminskiMed: So heartwarming to see the Great Prof Lindell give the inaugural Honorary Dan Rose Lecture at #ICLAF2024 - keeping the pat….
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RT @Louisecrowley4: Exciting to show for the first time our work investigating phenotype and function of IPF peripheral neutrophils at #ICL….
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Same here - sorry not to be there - have a great meeting !.
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Organ donors save lives.
Today is #EuropeanDonationDay #OrganDonorsSaveLives .Please have a conversation with your loved ones and let them know your wishes on organ donation.
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C’mon BA. First you delay our flight yesterday from Corfu from 1440 to 1900. Then the captain says he has run out of hours and we have to find hotels for the night with a new dep at 0930 today. Now you have delayed further to 12.45. What a joke! @British_Airways @SimonCalder.
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My 4-year term as President of @EU_IPFF ‘the Voice of Pulmonary Fibrosis Patients in Europe’ finished today. It’s been great working with amazing colleagues and partners and I am pleased to warmly welcome John Solheim (Norway) as the new President of EU-PFF. Over to you, John!
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Geat news! Kudos.
A very useful change indeed, supported by TF 13 on PH in chronic lung diseases.
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Excellent meeting of the Leicester Centre for Fibrosis Research today.
- Developing local & national panels of people w chronic disease mediated by fibrosis.- Raising fibrosis up the research policy agenda.@ActionPFsteve @LouiseVwain @DrAnvesha_Singh @haresh11.Even an impromptu cameo from the VC @NCanagarajah!.
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British media reports veteran BBC DJ Johnnie Walker @piratejw has advanced idiopathic pulmonary fibrosis. Our thoughts are with you Johnnie and your family at this difficult time & with the thousands of other people living with this devastating disease. @ActionPFcharity #curePF
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Discuss organ donation with your family NOW. In UK it’s their decision if you die - not yours.
The law around organ donation changed in England on 20 May 2020 to an opt-out system. 8/10 people say they would consider donating their organs, but only 1:3 have told their family. Have the conversation now and register your decision #OrganDonation.
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RT @EU_IPFF: 📢 The 6th session webinar on "Pulmonary Fibrosis and Cough – Causes, Treatments, and Quality of Life" is now available as a re….
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The 3rd European Pulmonary Fibrosis Patient Summit is over! Great event bringing together patients, carers, clinicians, researchers and pharma companies. Watch recordings of the main sessions on-line soon. Watch this space. #PFSUMMIT24 #StopPF.
And that's a wrap! The #PFSUMMIT24 has ended! Big thanks to our speakers, experts & attendees for their valuable contributions! The PF community sat together to shape a brighter future for patients. Let's keep the momentum going, collaborating to drive positive change in #PF.
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RT @EuropeanLung: Our information hub is available in nine languages! When visiting the ELF website, you can select you language using the….
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RT @ActionPFcharity: 'Collaboration is the greatest asset we have in stopping #PF. Together, we're forging a path towards a future where pe….
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