Clinical practice guidelines provide essential recommendations for diagnosing and treating medical conditions. In the realm of pulmonary hypertension a groundbreaking milestone has been achieved with the inclusion of two patient representatives, Pisana Ferrari and Gergely Meszaros JD, MSc, as members of the dedicated task force and co-authors of the new guidelines jointly developed by the European Society of Cardiology and the European Respiratory Society. This historic moment signifies not only a significant advancement for the individual representatives but also a monumental stride for the entire patient community. It establishes a crucial precedent, as moving forward, all European Society of Cardiology guidelines will feature involvement from patient representatives, mirroring a growing trend across scientific societies.
That is why we highly recommend participating in the webinar organised by the ERKNet | EURORDIS-Rare Diseases Europe on “Patient Involvement in Guidelines” by Matt Bolz-Johnson.
📆 Date: Monday, April 22, 2024
⏱ Time: 17:30 – 18:15 CET
🖊 Sign up and join the webinar at this link
Matt’s presentation will focus on how patients can best contribute in the development phase and how clinicians can encourage patient involvement.
Matt joined EURORDIS-Rare Diseases Europe in 2014 and is active in a number of advocacy actions including the European Reference Networks, Mental Health; Advanced Therapies. At EURORDIS, he has been instrumental in the establishment of the ERNs, by leading the development of the assessment framework for the ERNs and also supporting the rare disease community to active in shaping the development and implementation of the European Reference Networks (ERNs).
