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
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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/
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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
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Pulmonary hypertension and teenagers
The Pulmonary Hypertension association (PHA) has a page devoted to “Living with PH” which addresses pulmonary hypertension issues in teenagers.
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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
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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
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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/
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“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.
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Hellenic Pulmonary Hypertension (ΠΝΕΥΜΟΝΙΚΗ ΥΠΕΡΤΑΣΗ ΕΛΛΑΔAΣ)
Hellenic Pulmonary Hypertension (ΠΝΕΥΜΟΝΙΚΗ ΥΠΕΡΤΑΣΗ ΕΛΛΑΔAΣ) Adress: Mytilinis 35, 112 56 Athens Greece Μυτιλήνης 35 4ος όροφος, Athina 112 56, Ellada Phone Number: +30 2110131542 Association President: Ioanna Alyssandratou (Αλυσανδράτου Ιωάννα Ασθενής) Association Email: info@hellenicph.org http://www.hellenicph.org/
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Association HTaPFrance
Association HTaPFrance Adress: Association HTaPFrance 21, rue de Cîteaux 21190 MEURSAULT Phone Number: +33 (0)6 37 44 52 80 Association President: Maggy Surace Association Email: administration@htapfrance.com http://htapfrance.com/new.asp
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Asociación Salvadoreña Hipertension Arterial Pulmonar
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
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/
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Fundación Hipertensión Pulmonar de la República Dominicana (FHPRD)
Fundación Hipertensión Pulmonar de la República Dominicana (FHPRD) Adress: C. Ana Josefa Puello 20b, Santo Domingo, República Dominicana Phone Number: +1 829-487-5487 Association Presidente: Elba Rodriguez Association Email: fundacionhprd@gmail.com http://fundacionhprd.org.do/
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