Trustee of @ActionPFcharity, a patient organisation committed to supporting people living with pulmonary fibrosis. Board member of @EU_IPFF
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
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
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.
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!
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!
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
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 bit.ly/2X4rlWs #OrganDonation
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-web…
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.
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/informat… #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
We would like to thank @Ferrer, @Vicore and @PliantRX for supporting us to organize the European PF Patient Summit. Together, we've united patients, caregivers, advocates, and HCPs for an engaging event discussing the present and future of Pulmonary Fibrosis. #PFSUMMIT24
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
Steve Jones retweeted
@ActionPFsteve has chaired a comprehensive session on transplants, covering from procedural and clinical aspects to the patient journey. Achille Abbondanza shared his journey while Adnan Sayar and Radostina Getova shed light on the current landscape of transplant #PFSUMMIT24
