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/
Breaking down the language barriers – communicating with patients
“Breaking down the language barriers – communicating with patients”, an interesting online LinkedIn event organised by Origins-Insights which took place on February 22, 2022. An exploration of literacy and lexicon and how it can help in communication with patients. Link to webinar recording
Breaking down the language barriers – communicating with patients Read Post »
European Patients’ Academy on Therapeutic Innovation (EUPATI), a patient-led initiative to enhance knowledge of medicine R & D processes
The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a patient-led partnership working across stakeholders to enhance patient engagement, registered as an independent non-profit Foundation in the Netherlands. It announced today an important milestone for their “Toolbox”: 5 million unique users since its launch in 2016. Explore the EUPATI Toolbox to learn more about medicine
“Prevalence of mental disorders and impact on quality of life in patients with pulmonary arteriaI hypertension”, Frontiers in Psychiatry
Three patient representatives (Ralf Schmiedel, Pisana Ferrari, Hans-Dieter Kulla) contributed to the study and article. The first two are patients having undergone lung transplant, Mr Kulla is the President of ph e.v., German PH association. The other authors are Karen M. Olsson, Tanja Meltendorf, Manuel J Richter, Jan Fuge, Jan Christopher Kamp, Da-Hee Park, Henning
Fundación Amigos HAP
Fundación Amigos HAP Mexico Association Email: contacto@amigoshap.mx https://www.facebook.com/amigoshap/
Fundación Amigos HAP Read Post »
PULMONĀLĀS HIPERTENSIJAS BIEDRĪBA
PULMONĀLĀS HIPERTENSIJAS BIEDRĪBA Adress: Celtnieku iela 6A-35 Salaspils LV-2121 Latvija Phone Number:+371 26720675 Association President: Ieva Plume Association Email: phbbiedriba@gmail.com http://www.phlatvia.lv/lv/
PULMONĀLĀS HIPERTENSIJAS BIEDRĪBA Read Post »
“Exercise your way to better post-transplant health”, by the Council of Europe European Directorate for the Quality of Medicines & HealthCare EDQM
The Council of Europe and its Committee on Organ Transplantation support and recommend physical activity as a major way to improve the health status of transplant patients. Regular light-to-moderate exercise plays a crucial role in restoring both the physical and mental health of transplant recipients. The authors advise organ recipients ask their transplant doctors to
Gerry, a patient advocate for pulmonary arterial hypertension, on Instagram
Gerry is 32 year old, mother of 2, military wife, living in Florida. She was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) and congestive heart failure (CHF) in Sept of 2018. Since her diagnosis she says she has felt the draw to share her story so that others can find hope and inspiration from it.
Gerry, a patient advocate for pulmonary arterial hypertension, on Instagram Read Post »
Suomen PAH-potilasyhdistys ry. PHA Finland
Suomen PAH-potilasyhdistys ry. PHA Finland Adress: Kettutie 4 C, 00800 Helsinki, Finland Association President: Sonja Koski, Ph.D., dos. Association Email: suomenpahry@gmail.com http://suomenpah.org
Suomen PAH-potilasyhdistys ry. PHA Finland Read Post »
“Sotatercept for the Treatment of Pulmonary Arterial Hypertension”, New England Journal of Medicine
Marc Humbert, M.D., Ph.D., Vallerie McLaughlin, M.D., J. Simon R. Gibbs, M.D., Mardi Gomberg-Maitland, M.D., Marius M. Hoeper, M.D., Ioana R. Preston, M.D., Rogerio Souza, M.D., Ph.D., Aaron Waxman, M.D., Ph.D., Pilar Escribano Subias, M.D., Ph.D., Jeremy Feldman, M.D., Gisela Meyer, M.D., David Montani, M.D., Ph.D., et al., “Sotatercept for the Treatment of Pulmonary Arterial
PHA Canada
PHA Canada Address: A408 – 55 Water Street, Office 8928 Vancouver, BC, V6B 1A1 Phone Number: +1 604-682-1036 Association President: Joan Paulin Association Email: info@phacanada.ca https://www.phacanada.ca/
PHA Europe
PHA Europe European pulmonary hypertension umbrella organisation 33 member associations Address: Wilhelmstraße 21. A-1120 Vienna, Austria Phone Number: (+43) 1 402 3725 Association President: Eva Otter Association Email: info@phaeurope.org https://www.phaeurope.org/
PHAA Australia
PHAA Australia Association President: Joan Godber Association Email: admin@phaaustralia.com.au https://www.phaaustralia.com/
2nd edition of “Nefes”, the Turkish PH patient association PAHSSc’s monthly newsletter
The 2nd edition of Nefes contains Interviews with health care professionals, an article about the PAHSSc President Kamil Hamidullah and a number of patient stories. Download the newsletter at this link: ac24e500cf111ce1a4741e3e0f69954a
2nd edition of “Nefes”, the Turkish PH patient association PAHSSc’s monthly newsletter Read Post »
“PH Human”, a JanssenWithMe platform provides support resources for people with pulmonary arterial hypertension and features a number of real-life experiences from patients
PH Human, part of the JanssenWithMe digital platform, was created in partnership with the pulmonary hypertension patient community and is dedicated to supporting people with the condition. It has a particular focus on pulmonary arterial hypertension (Group 1 WHO classification of pulmonary hypertension). It helps share real-life experiences from people living with pulmonary arterial hypertension
The EU Clinical Trials Regulation came into force 31st of January 2022
The European Union (EU) pharmaceutical legislation known as the Clinical Trials Regulation comes into force today, the 31st of January 2022. It aims to ensure the EU offers an attractive and favourable environment for carrying out clinical research on a large scale, with high standards of public transparency and safety for clinical trial participants. Prior to
The EU Clinical Trials Regulation came into force 31st of January 2022 Read Post »