An educational video about chronic thromboembolic pulmonary hypertension by phaware global
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 “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
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
“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
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
My life with pulmonary arterial hypertension and rheumatism, a patient story
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 »
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
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
“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
Pulmonary Hypertension Association USA
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 »
A todo pulmón Guayana HP
A todo pulmón Guayana HP Venezuela Phone Number: +58 424-9198559 Association Email: grupodeapoyoatodopulmon@gmail.com https://www.facebook.com/AtodopulmonG
A todo pulmón Guayana HP Read Post »
Asociación Civil de Hipertensión Pulmonar Uruguay
Asociación Civil de Hipertensión Pulmonar Uruguay Phone Number: +598 (0)96252721 Association: Claudia Sessa Association Email: contacto@adhipu.org.uy http://adhipu.org.uy/
Asociación Civil de Hipertensión Pulmonar Uruguay Read Post »
Turkish pulmonary Hypertension and Scleroderma Patient Association PAHSSc
Pulmonary Hypertension and Scleroderma Patient Association Adress: Akdeniz Mah. Şehit Fethibey cad. No:55/K:9 D:91 Heris Tower İş Merkezi PK: 35210 Phone Number: +90 850 885 27 11 Association President: Kamil Hamidullah Association Email: pahssc@gmail.com https://www.pahssc.org.tr/
Turkish pulmonary Hypertension and Scleroderma Patient Association PAHSSc Read Post »
Sociedad Latina de Hipertensión Pulmonar
Sociedad Latina de Hipertensión Pulmonar Association Email: info@sociedadlatinahp.org https://www.facebook.com/LatinosConHP
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Patient group trainings at Beacon, a UK-based non-profit organisation for rare diseases
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 »
Pulmonary hypertension and teenagers
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 »
Find a PH clinical trial near you with phaware’s “Clinical Trials Matcher”
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 »
Making the most of remote pulmonary hypertension medical appointments, a resource by the pulmonary hypertension UK (PHA UK)
The Pulmonary Hypertension Association UK (PHA UK) provides very useful suggestions on how to best prepare for a remote medical appointment. You can find the resource on the PHA UK website at this link
“Realistic medicine” puts the person receiving health and social care at the centre of decisions made about their care
“Realistic medicine” puts the person receiving health and social care at the centre of decisions made about their care. The term Realistic Medicine was first introduced by Scotland’s Chief Medical Officer, Catherine Calderwood, in her annual report from 2016 and is being embedded across Scotland, championed by local and national clinical leaders. The Realistic Medicine
PHA UK
Pulmonary Hypertension Association UK (PHA UK) Adress: Unit 1, Newton Business Centre, Newton Chambers Road, Thorncliffe Park, Chapeltown, Sheffield,S35 2PH Phone Number: +44 (0)1709 761450 Director of Membership Support: Shaun Clayton Association Email: office@phauk.org https://www.phauk.org/