💡 Research Community! 💡 Have you explored our #RStudio introduction? It’s designed to help you navigate the platform, start projects and do basic analysis. Check it out, and share your feedback to enhance the toolbox! Visit: rarediseaseresearch.ie/toolbox/

Jean-Michel will be joined by the experts at our Mental Health: Actions and Awareness webinar on 25 February. Together they will explore how lung disease impacts mental health and the current research. Register: europeanlung.org/en/get-involve… #MentalHealthAwareness ERS

Congratulations to Dr Niamh Logan who was the winner of the Terence Moran Memorial Award for the best case presentation at the joint Irish Thoracic Society ILFA Ireland ILD Study Day. The 4 finalists did a super job. ILFA is proud to support education for healthcare professionals.

The Pulmonary Fibrosis Trust would like to hear from PF sufferers, on how long they waited for diagnosis and referrals. We would be grateful if you would complete the 3 questions by clicking the link below. buff.ly/40S6Qw2

We are delighted to announce a short extension to the deadline for abstracts for the Rare Disease Research Conference 2025! Don't miss the chance to submit your case study or rare disease research for consideration for poster presentation by 24th February! docs.google.com/forms/d/e/1FAI…

A new drug, nerandomilast, has shown positive topline results in a clinical trial for people with progressive PF.   The FIBRONEER™-ILD trial suggests this drug could be an important step, potentially leading to a new treatment option in the future. actionpf.org/news/fibroneer…

There are 24 European Reference Networks covering a range of #rare #complex #lowprevalence diseases. Find out more about ERNs and the conditions they cover: ern-lung.eu/wp-content/upl…

It is great to represent EU-PFF and be at the 23rd ERS Lung Science Conference on behalf of the European Lung Foundation Foundation talking patient involvement in research

Delighted to meet so many patient advocates attending the 9th Annual ERN-LUNG Board meeting whilst representing EU-PFF & the European Lung Foundation foundation

ERN-LUNG's network coordination team member Gergely Meszaros giving an insight on most recent and ongoing communication and dissemination activities

Attending the 2nd Irish Rare Disease Clinical Trial Network Conference representing ILFA Ireland and the EU-PFF - kicking off with sessions on ERN Registries

Preparations underway for the 1st European PF Patient Advocacy Forum - 4 days of learning & collaborative discussions led by the European #PulmonaryFibrosis Federation EU-PFF #CurePF

Great session on "Enhancing Patient Advocacy through Evidence Based Practices" led by Prof. Anne-Marie Russell 🎗️♀️⚕️ at the EU-PFF 's 1st European PF Patient Advocacy Forum #CurePF

Great to see publication of the first positive phase 3 trial in patients with IPF. This represents an important step forward in the treatment of this terrible disease. #cureipf

We are pleased to share the positive topline results from the Phase 2b CORAL Trial of Haduvio in Patients with Idiopathic Pulmonary Fibrosis Chronic Cough.   Join our conference call today, June 2nd, at 8:30 a.m. ET.  Read the press release: ow.ly/MCzh50W2spG $TRVI

Fantastic news for all our patients with IPF who suffer with cough! An overall 43% reduction in cough counts, similar improvement in patient reported cough and benefits seen in 2 weeks. We look forward to the phase 3 study!

Dear ILD community, You are cordially invited to this webinar organized by RespirEffect (REG) (REG) tomorrow June 5th at 4 pm BST - UK time (5 pm CEST) 👇 #Screening #EarlyDiagnosis #ILD #PulmonaryFibrosis #PrimaryCare 🫁🌎

My thanks to MEP Romana Jerković Kraljić MEP & the European Respiratory Society for this timely event on "Scaling up EU Prevention policies for Respiratory Health" so important for the #pulmonaryfibrosis & wider #Respiratory Patient community #CurePF

The first patient-centered studio session at #ERSCongress! 💙 Co-chaired by patient representatives Helen Parks and Steve Jones, this busy session explored why many patients struggle to access pulmonary rehabilitation globally.

🚨Free educational opportunity: apply now for the ERN-LUNG Academy 2026 We are calling on medical professionals across the EU to apply for the opportunity to develop their knowledge of rare respiratory diseases. Apply by 30 November, 2025 – learn more: bit.ly/3L6KjqY