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. […]
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
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
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
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
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
A very clear explanation, in simple language and with excellent visuals, about chronic thromboembolic pulmonary hypertension from Respifil The fact sheet can be dowloaded from Respifil’s website at this link
An educational ideo developed by phaware about chronic thromboembolic pulmonary hypertension. The video can be view at this link on the phaware website
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
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
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
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
I’m B J-N , 42 years old living with my significant other. We don’t have any children. In my childhood and youth I was always very sporty and active. I’m into athletics, children’s gymnastics and finally even competitive gymnastics. I started horseback riding when I was 13. But even then I was always more susceptible
My life with pulmonary arterial hypertension and rheumatism, a patient story Read Post »
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
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
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
Pulmonary Hypertension Association USA (PHA) Address: 1121 14th St NW, Suite 150, Washington D.C., 20005 Phone Number: +1 301-565-3004 President and CEO: Matt Granato Email: PHA@PHAssociation.org https://phassociation.org/
Pulmonary Hypertension Association USA Read Post »
Beacon is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart. Their patient group trainings aim to help these often small and voluntary organisations to form, grow, and professionalise. Their events and trainings also give patient groups the opportunity to connect and collaborate with others across
Patient group trainings at Beacon, a UK-based non-profit organisation for rare diseases Read Post »
The Pulmonary Hypertension association (PHA) has a page devoted to “Living with PH” which addresses pulmonary hypertension issues in teenagers.
Pulmonary hypertension and teenagers Read Post »
The phaware global association was founded by a group of pulmonary hypertension awareness activists and is comprised of patients, caregivers, and medical professionals. It creates PH awareness and global engagement on behalf of families, caregivers and medical professionals and supports innovative PH research efforts to find a cure for this deadly disease. phaware.global is both
Find a PH clinical trial near you with phaware’s “Clinical Trials Matcher” Read Post »
