Educational video about chronic thromboembolic pulmonary hypertension by RespiFil, the French national network for respiratory diseases

Excellent educational video in French language about chronic thromboembolic pulmonary hypertension, developed by RespiFil. Discusses causes of chronic thromboembolic pulmonary hypertension, symptoms, diagnostic work up, treatments. Features interviews with French PH experts from the French Network of PH (Pulmotension) including Prof. Marc Humbert from the University Hospitals of Paris-Sud Bicêtre, Le Kremlin-Bicêtre (France), and a […]

Educational video about chronic thromboembolic pulmonary hypertension by RespiFil, the French national network for respiratory diseases Read Post »

Dates for the European Rare Disease Organisation, EURORDIS, Summer School for Patient Advocates 2023 now announced: June 19-23, 2023, Barcelona

The EURORDIS Summer School on Medicines Research & Development consists of a one week of face-to-face training, held in June in Barcelona. Free e-learning modules are also available on demand. The EURORDIS Summer School aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development.

Dates for the European Rare Disease Organisation, EURORDIS, Summer School for Patient Advocates 2023 now announced: June 19-23, 2023, Barcelona Read Post »

400+ pulmonary hypertension patient, caregiver and medical professionals’ stories from the podcast series by phaware global

400+ pulmonary hypertension patient, caregiver and medical professionals’ stories from the podcast series by phaware global association® I’M AWARE THAT I’M RARE: THE PHAWARE® PODCAST is devoted to raising global awareness about pulmonary hypertension with dynamic stories from pulmonary hypertension patients, caregivers and medical professionals from around the world. Over 400 stories have been included in the podcast

400+ pulmonary hypertension patient, caregiver and medical professionals’ stories from the podcast series by phaware global Read Post »

PAHSSc, Turkish pulmonary hypertension association, interview with Shaun Clayton, Director of Membership Support at the Pulmonary Hypertension Association (PHA UK)

Could you kindly tell us something about yourself? I am the Director of Membership Support at the Pulmonary Hypertension Association (PHA UK), where I have worked for the last ten years. As part of a small yet dynamic team, my role is to ensure the charity is supporting its membership in the best possible way.

PAHSSc, Turkish pulmonary hypertension association, interview with Shaun Clayton, Director of Membership Support at the Pulmonary Hypertension Association (PHA UK) Read Post »

EURORDIS, the European Rare Disease Organisation, and EFPIA, the European Federation of Pharmaceutical Industries and Associations issue Joint Statement on how to improve patient access to medicines

The EURORDIS-EFPIA Joint Statement on proposals to improve patient access to medicines was published on June 15 2022. As the EURORDIS-EFPIA press release reads “This is the first time that EURORDIS-Rare Diseases Europe, as a patient organisation, has come together with the pharmaceutical industry’s European organisation in such a structured dialogue. Discussions focused on how

EURORDIS, the European Rare Disease Organisation, and EFPIA, the European Federation of Pharmaceutical Industries and Associations issue Joint Statement on how to improve patient access to medicines Read Post »

June 9, 2022: Patient engagement in drug development, a live symposium organised by admedicum

On June 9th 2022, patient engagement experts at admedicum organized a live event in collaboration with HollandBIO and INSMED Pharmaceuticals, Inc. in Utrecht, with over 70 attendees and distinguished speakers from patient organisations, healthcare, regulatory and industry. The theme was “Patient engagement in 2030: how can patient engagement contribute towards building a new ecosystem for

June 9, 2022: Patient engagement in drug development, a live symposium organised by admedicum Read Post »

PAHSSc, Turkish pulmonary hypertension association, interview with Noriko Murakami, President of PHA Japan, mother of a young patient who had a lung transplant from a living donor

Noriko Murakami is the President of PHA Japan and the mother of Yukiko, a young PH patient who had a lung transplant surgery from a live donor. The PAHSSc is grateful to Mrs. Noriko Murakami for having agreed to contribute to its magazine Nefes (The Breath ) with insights on lung transplantation from a live

PAHSSc, Turkish pulmonary hypertension association, interview with Noriko Murakami, President of PHA Japan, mother of a young patient who had a lung transplant from a living donor Read Post »

Pulmonary hypertension patient booklet published by RespiFIL, the French national network for rare respiratory diseases, June 15, 2022

The pulmonary hypertension patient booklet published in June 2022 by RespiFIL gives an overview of the disease, its symptoms, its diagnosis and available treatments. There are also tips on how to live better with the disease on a daily basis. It was written in collaboration with health professionals from expert pulmonary hypertension centres and the

Pulmonary hypertension patient booklet published by RespiFIL, the French national network for rare respiratory diseases, June 15, 2022 Read Post »

PAHSSc, Turkish pulmonary hypertension association, interview with Aryeh Copperman, the CEO of the PH Israel Patient Association and husband of a pulmonary arterial hypertension patient 

Would you kindly give us some information about yourself? My name is Aryeh Copperman, I am the CEO since 2005 of Isreal’s pulmonary hypertension association. I have a BA in Accounting and information systems, and Masters Degree in Public Health, from the Hebrew University in Jerusalem. I am married with 4 children. My wife has

PAHSSc, Turkish pulmonary hypertension association, interview with Aryeh Copperman, the CEO of the PH Israel Patient Association and husband of a pulmonary arterial hypertension patient  Read Post »

PHA Europe “Call to Action on the unmet needs of patients with pulmonary hypertension” launch event in the European Parliament, April 2022

PHA Europe organized an event in the EU Parliament on April 26, 2022 for the launch of its “Call to Action on the unmet needs of patients with pulmonary hypertension”. The event was hosted by MEP Istvan Ujhelyi (Hungary) and chaired by Prof. Marc Humbert (ERS President). The Call to Action is a revisit of

PHA Europe “Call to Action on the unmet needs of patients with pulmonary hypertension” launch event in the European Parliament, April 2022 Read Post »

COVID-19 vaccine response in solid organ transplant recipients: results from ORCHESTRA cohort study

To date, several reports have underlined low rates of antibody response to mRNA COVID-19 vaccines in solid organ transplant (SOT) recipients. According to the authors of an article titled “Evaluation of the Kinetics of Antibody Response to COVID-19 Vaccine in Solid Organ Transplant Recipients: The Prospective Multicenter ORCHESTRA Cohort” (1) previous studies assessing the antibody

COVID-19 vaccine response in solid organ transplant recipients: results from ORCHESTRA cohort study Read Post »

“Inspirer, s’exprimer”, a pulmonary arterial hypertension conversation kit to help patients communicate with doctors and with their loved ones, by HTaPFrance, the French pulmonary hypertension association

On the occasion of May 5, the Pulmonary Hypertension Awareness Day, in 2022, HTaPFrance released the French version of a “Pulmonary Hypertension conversation kit” developed by Janssen, as part of the PHuman project , in collaboration with pulmonary hypertension patient associations around the world. The aim is to help patients better understand the condition and

“Inspirer, s’exprimer”, a pulmonary arterial hypertension conversation kit to help patients communicate with doctors and with their loved ones, by HTaPFrance, the French pulmonary hypertension association Read Post »

Pulmonary arterial hypertension French educational video by Respifil, the French health network for rare pulmonary diseases

Excellent educational video in French language about pulmonary arterial hypertension developed by Respifil. Discusses causes, symptoms, diagnostic work up, treatments. Features interviews with French pulmonary hypertension experts from the French Network of pulmonary hypertension (Pulmotension) including Prof. Marc Humbert and Olivier Sitbon from the University Hospitals of Paris-Sud Bicetre, Le Kremlin-Bicetre (France), and a pulmonary

Pulmonary arterial hypertension French educational video by Respifil, the French health network for rare pulmonary diseases Read Post »

Info on treatments for pulmonary arterial hypertension, life style advice and patient stories on “The PAH Initiative”, by United Therapeutics

The PAH Initiative was established by United Therapeutics with the aim of providing knowledge and inspiration based on science and research in pulmonary arterial hypertension today. Here you can find interesting information on pulmonary arterial hypertension, treatments and life style advice as well as patient testimonials. The “Learning Library” section of the PAH initiative contains useful

Info on treatments for pulmonary arterial hypertension, life style advice and patient stories on “The PAH Initiative”, by United Therapeutics Read Post »

European Respiratory Society (ERS) web event on “Living with rare respiratory diseases through the COVID-19 pandemic”

This live online discussion organised by the European Respiratory Society (ERS) was held on March 23, 2022, and focused on the experiences and learnings of specialists and patients in the fields of idiopathic pulmonary fibrosis, pulmonary hypertension, cystic fibrosis and bronchiectasis ,since the emergence of COVID-19. ERS President Elect Professor Marc Humbert and European Respiratory

European Respiratory Society (ERS) web event on “Living with rare respiratory diseases through the COVID-19 pandemic” Read Post »

“The Added Value of Patient Engagement in Early Dialogue at the European Medicines Agency (EMA): Scientific Advice as a Case Study”, Frontiers in Medicine

  ABSTRACT The European Medicines Agency provides Scientific Advice to medicines developers and patient input has been an integral part of this process for many years. As end users of medicines, patients bring their perspectives to many different processes along EMA’s regulatory pathway, complementing the scientific expertise. While the value of including patients has been

“The Added Value of Patient Engagement in Early Dialogue at the European Medicines Agency (EMA): Scientific Advice as a Case Study”, Frontiers in Medicine Read Post »

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