Steve Jones @ActionPFsteve
Trustee of @ActionPFcharity, a patient organisation committed to supporting people living with pulmonary fibrosis. Board member of @EU_IPFF actionpulmonaryfibrosis.org United Kingdom Joined October 2017-
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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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Steve Jones retweeted
Our Phase 2a RIVER trial in patients with refractory chronic cough has completed enrollment. We look forward to releasing topline results in the first quarter of 2025. Read the full press release here: ow.ly/qEgi50TPF0z #Cough #ClinicalTrials #Biotech #Research
Steve Jones retweeted
Excellent lecture by Sara Tomassetti paving the way for better understanding ILAs #ICLAF2024
Steve Jones retweeted
So proud of Prof Lindell, who's giving the first Dan Rose Memorial Lecture at #ICLAF2024 - Dan was an amazing patient advocate who created the Pulmonary Fibrosis Foundation and single-handedly transformed Pulmonary Fibrosis patient support & advocacy. Well deserved, Kathy!!!
Steve Jones retweeted
So heartwarming to see the Great Prof Lindell give the inaugural Honorary Dan Rose Lecture at #ICLAF2024 - keeping the patients at the center! #GreatICLAFTalks
Steve Jones retweeted
Exciting to show for the first time our work investigating phenotype and function of IPF peripheral neutrophils at #ICLAF2024 .Thank you to @ActionPFcharity for awarding me the conference award and to all the participants of the HYBRID study. @TeamRespiratory @teamneutrophil
Same here - sorry not to be there - have a great meeting !
Same here - sorry not to be there - have a great meeting !
Organ donors save lives
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
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!
Geat news! Kudos.
Excellent meeting of the Leicester Centre for Fibrosis Research today.
Excellent meeting of the Leicester Centre for Fibrosis Research today.
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
Discuss organ donation with your family NOW. In UK it’s their decision if you die - not yours
Discuss organ donation with your family NOW. In UK it’s their decision if you die - not yours
Steve Jones retweeted
📢 The 6th session webinar on "Pulmonary Fibrosis and Cough – Causes, Treatments, and Quality of Life" is now available as a recording. You can find the full-length webinar along with all previous sessions here ⏯️ eu-pff.org/eu-pff-summit-…
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
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
Steve Jones retweeted
Our information hub is available in nine languages! When visiting the ELF website, you can select you language using the globe at the top of the page (pictured here.) All patients should have access to evidence-based information. Learn more europeanlung.org/en/information… #LungHealth
Steve Jones retweeted
'Collaboration is the greatest asset we have in stopping #PF. Together, we're forging a path towards a future where people are diagnosed quicker, have fast access to effective treatments, and can get all the support services they need, no matter where you live.' - @BradleyJPrice
'Collaboration is the greatest asset we have in stopping #PF. Together, we're forging a path towards a future where people are diagnosed quicker, have fast access to effective treatments, and can get all the support services they need, no matter where you live.' - @BradleyJPrice https://t.co/2TBvY3uNpJ
Steve Jones retweeted
Three parallel workshops on different topics – on #Oxygen access in Europe, on the role of patients in the design of #clinicaltrials trials, and on fundamental aspects of the organ of the lungs. Which workshop did you choose? #PFSUMMIT24 #PulmonaryFibrosis
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6K Followers 3K Following 💜UK charity supporting people affected by pulmonary fibrosis 🧬funding research towards a better future for people living with PF 🤝together we are stronger
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936 Followers 366 Following Interests: sarcoma, palliative care, cancer quality of life, PROMs, patient involvement, cancer research, heresy, faith and castles.
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21 Followers 32 Following We are a support group in Huddersfield for people suffering with Pulmonary Fibrosis/interstitial lung disease.
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