Steve Jones
@ActionPFsteve
Trustee of @ActionPFcharity, a patient organisation committed to supporting people living with pulmonary fibrosis. President of @EU_IPFF
ID:925355778126614528
http://www.actionpulmonaryfibrosis.org 31-10-2017 13:36:24
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All patients should have access to evidence-based information. Learn more europeanlung.org/en/information… #LungHealth
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 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
Pilar Rivera-Ortega on the importance to rethink how we look at endpoints in ILD trials - move to looking at “feels, functions, survives” with a shift towards more emphasis on collecting and reporting patient experience measures #PFSUMMIT24
A strong rallying cry from Steve Jones to open #PFSUMMIT24 : we need a timed pathway for PF diagnosis to put the disease on equal footing with cancer
Steve Jones , president of EU-PFF, is joined by Assumpta Ricart, Catalan Health Ministry Representative, Dr. Francesco Bonella , Dr. Elisabetta Balestro from our Scientific Advisory Board and the virtual participation of Monika Gappa, ERS President.
Let the Summit begin! Join us for the opening session of #PFSUMMIT24 as we kick off the 3rd European #PulmonaryFibrosis Patient Summit! Together, we'll set the stage for three days of collaboration, education, and networking!
Congratulations to Bradley Price, Sue Thomas and the pathway team. Thank you for your dedication and hard work over the last year. In future we’ll look back on this as a key milestone on the way to improved treatment and care for ILD patients in the UK. Action for Pulmonary Fibrosis
🚨NEW REPORT ALERT🚨
#OneVoiceILD and Action for Pulmonary Fibrosis have launched an Optimum Integrated Care Pathway for transforming ILD services.
actionpf.org/get-involved/t…
Excellent review of ILD for the non-specialist by Toby Maher. Good article for patients to show their GPs
High risk of lung cancer in surfactant-related gene variant carriers pubmed.ncbi.nlm.nih.gov/38575158/
Very proud of this Vincent Cottin collaborative work showing the risk of lung cancer in SFTPA1/SFTPA2 mutation carriers particularly if smoking
Great meeting, excellently chaired by Sarah Davies. Looking forward to creation of an ILD care pathway for Wales with time bound targets to drive improved standards of care. As ever, great to work with you Joseph Carter and Jenny Lynch-Wilson
Comedy composer Steve Brown, known for his work with Rory Bremner 💙🇺🇦 and @lennyhenry has died at 66 from Pulmonary Fibrosis. As his agent Vivienne Clore tweeted « sod fibrosing lung disease ». Action for Pulmonary Fibrosis #curePF