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 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 Phone Number: +598 (0)96252721 Association: Claudia Sessa Association Email: contacto@adhipu.org.uy http://adhipu.org.uy/
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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 Association Email: info@sociedadlatinahp.org https://www.facebook.com/LatinosConHP
Sociedad Latina de Hipertensión Pulmonar 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 »
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. 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
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”, 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 »
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
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 Mexico Association Email: contacto@amigoshap.mx https://www.facebook.com/amigoshap/
Fundación Amigos HAP Read Post »
Associazione Malati di Ipertensione Polmonare (AMIP) Adress: Via Ardea 1/B 00183 Roma Phone Number: +39 333 115 0989 Association Email: amip.onlus@yahoo.it http://www.assoamip.net/ https://www.facebook.com/AssociazioneMalatiDiIpertensionePolmonare
Associazione Malati di Ipertensione Polmonare (AMIP) Read Post »
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 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 »
Asociación Salvadoreña Hipertension Arterial Pulmonar Salvador, El Salvador Phone Number: +503 7874 2196 Association Email: asociacionashap2016@gmail.com https://www.facebook.com/ELSALVADORASHAP
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Asociación de Hipertensión Pulmonar Ecuador Phone Number: +229 67 72 09 94 Association Presidente: María Dolores Páez Association Email: paezpaquita1@gmail.com http://www.hipertensionpulmonar.ec/
Asociación de Hipertensión Pulmonar Ecuador Read Post »
