Jenny Lynch-Wilson
@JennyLynchWils
Wife, mother, smallholder, ILD Specialist Nurse, Cymraes
ID:916980791292424192
08-10-2017 10:57:12
531 Tweets
166 Followers
250 Following
Day 3 starts with Steve Jones chairing an outstanding session on latest research in #pulmonaryfibrosis . Vincent Cottin gives insights on new drugs in development & need for new drugs to demonstrate efficacy against current drugs so greater patient numbers are required #PFsummit24
Day 3 begins with an excellent talk from Vincent Cotton EU-PFF #PFSUMMIT24 ... Intro to changing face of clinical trial design in PPF ILD-IN ERS Assembly 12 - ILD
Jean-Michel Fourrier talking at the Policy Engagement Policy Roundtable at 3rd European PF Patients Summit. - patients need to partner with clinicians to influence policy ‘we need to demand more and be less shy! #pfsummit24 #curepf
In the Patient Engagement Policy roundtable, chaired by Colin Edwards, Bradley Price , matt johnson, Jean-Michel Fourrier, Emmanuelle Clerisme-Beaty&@fratommy75 discussed the importance of including patients in health care decisions especially in the context of research #PFSUMMIT24
In the session 'Understanding Pulmonary Health and Genetic Factors', today at the EU PFF Summit 2024, Dr Maria Molina Molina, Clare (Hodkinson) Beckett, Moises Selma and Wendy Adams talked about the role of genetics in #pulmonaryfibrosis and the current state of research. #PFSUMMIT24
Bradley Price Fabulous to meet with Dr Marlies Wijsenbeek EU-PFF and Eamonn Costello patientMpower - the future is digital 💪🏼
Bradley Price EU-PFF patientMpower Eamonn Costello Jenny Lynch-Wilson At dinner, a patient with #pulmonaryfibrosis was telling me about home monitoring & using an app. He told me the technology company really listened to him & cared about his views/thoughts. I asked what the app was called and was unsurprised when he said patientMpower
So wonderful to see the #ILD community and discuss ideas, future plans and how we can support patients with #pulmonaryfibrosis #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
1st session of #pfsummit24 starts with a look at supportive care - opening with Matt Cullen from ILFA Ireland, a patient & advocate sharing his experience & wise words
Great talks from all speakers at the #PFSUMMIT24 session focussed on supportive care #pulmonaryfibrosis
Prof. Anne-Marie Russell 🎗️♀️⚕️ considers supported self-management, the integrated respiratory pathway, the blended approach to care with the #MDT & the Delphi study suggestion of essential components of supportive care for #pulmonaryfibrosis #PFsummit24
John Solheim chairs the session on navigating supportive care for #pulmonaryfibrosis - rightfully unapologetic about coughing 💪🏼 John compares AI understanding of supportive care versus the human touch #PFsummit24
We need a time bound patient care pathway and lobby to raise awareness. We need to raise our global voice for patients with #pulmonaryfibrosis . The time is now #PFsummit24