Pulmonary arterial hypertension explained in simple words, with excellent visuals, in a French educational video posted on the HTAPFrance YouTube channel.
Disabilities are often not obvious to the eye, as the infographic of the cover photo eloquently illustrates (source: LinkedIn post by Pam Cusick, Senior Vice President at Rare Patient Voice). This the case with many rare and chronic disease patients, including pulmonary hypertension. Behaviours of people with invisible illnesses may be hard for others to
Congrats to our friends from PAHSSc, the Turkish PH patient association, for the first edition of their new magazine “Nefes” (Breath), 60 pages of interesting information. This issue focuses on the topic of lung transplantation, with testimonials of two patients, reflections of Prof. Lewis Rubin, MD., Prof Mehmet Akbulut, MD., Dr. Gültekin Hoş, MD. and
PAHSSc, the Turkish PH association, launches Nefes, its first monthly newsletter! Read Post »
Could you kindly tell us something about yourself? I have been president of the German PHeV since 2012. My input and the one of all others is voluntary! I am not a patient and I contribute to our organization in a “strategical” way. We have regional groups in nearly every region of Germany. Our group
On December 16, 2021 the UN General Assembly formally adopted Resolution A/RES/76/132 recognising the over 300 million Persons Living with a Rare Disease (PLWRD) worldwide and their families. The Resolution focuses on the importance of non-discrimination and advances key pillars of the UN Sustainable Development Goals (SDGs), including access to education and decent work, reducing
Congratulations to Prof. Marc Humbert for his election as President of the European Respiratory Society (ERS). Prof. Humbert has published more than 700 peer-reviewed articles, mostly in the field of pulmonary hypertension, and is widely considered one of the world TLs in pulmonary hypertension. In his inaugural speech Prof. Humbert said he would continue to
Patient Focused Medicines Development (PFMD) is a not-for-profit collaborative initiative benefiting patients and health stakeholders by designing a patient-centred healthcare system with patients and all stakeholders. The importance of patient engagement (PE) across the medicines development continuum is widely acknowledged across diverse health stakeholder groups, including health authorities; however, the practical applications of how to
During the COVID-19 pandemic, many health care systems suspended their non-urgent activities. Pulmonary Hypertension patients were subjected to the same rules as other patients during the COVID-19 pandemic, with no prioritised care despite their rare and severe condition. A consortium composed of pulmonary hypertension patient associations and scientific societies was created to launch the PH-CARE-COVID survey,
The European Society for Organ Transplant (ESOT) is delighted to launch the first edition of the ESOT Hackathon to identify and develop tools to serve the transplant patient community. Whether it is an idea, a scenario, a prototype, an app, an interface, a proof of concept or a turnkey solution, ESOT is looking for innovative
On June 15, 2022 the European Society for Organ Transplant (ESOT), issued a joint statement together with the European Kidney Health Alliance (EKHA), European Cancer Patients Coalition (ECPC) and Union Therapeutics calling on the European Commission, Parliament, and the Council to fully integrate the systematic protection of immunocompromised patients in their response and preparedness efforts
This booklet published by AIPI, the Italian Pulmonary hypertension association, contains an overview of the different forms of pulmonary hypertension and more specific information about pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension, including treatments and surgical solutions. The booklet can be downloaded from the AIPI website at this link Translation into other languages of
In case you missed the European Organisation for Rare Diseases (EURORDIS)’s live event on equity in access to COVID-19 vaccines you can listen to the presentations by top vaccine expert Francois Houÿez and EURORDIS CEO Yann Le Cam on the EURORDIS YouTube channel at this link
The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a multi-stakeholder public-private partnership established as an independent non-profit Foundation in the Netherlands. The EUPATI Toolbox contains resources to assist patient engagement on diffferent : Basics of Medicine R&D, Clinical Development/Trials, Drug Discovery, Personalised Medicine, Regulatory Affairs, Benefit and Risk Assessment, HTA, Pharmaceutical Development,
Mélanie Gallant-Dewavrin shares her views on the main challenges for pulmonary hypertension patients and the key role of patient associations during an interview aired on the occasion of Pulmonary Hypertension Day, May 5. Founded in 1996, HTaPFrance is the longest standing PH patient association in Europe, together with ph e.v., the German PH patient association,
A patient and carer survey was conducted in the USA with the aim of determining if participation in a pulmonary hypertension support group has a significant effect on quality of life (QOL) in a population of patients with pulmonary hypertension and their caregivers using the emPHasis-10 questionnaire. 165 subjects were enrolled in the study; 122
“Pulmonary Hypertension-Get informed and inform” is an educational video about pulmonary hypertension. It can be viewed on the Greek association for Pulmonary Hypertension, Hellenic PH’s Youtube channel at this link
A very interesting article about epoprostenol, the first ever therapy to be approved for the treatment of pulmonary arterial hypertension. The development of epoprostenol followed on from the discovery of endogenous prostacyclins in the vasculature by Sir Salvator Moncada et al. in the 1970s. Shortly after this, epoprostenol was synthesised and shown to have anti-platelet activity
Informative leaflet in Greek on pulmonary hypertension, its symptoms and treatments. Also Includes information about the Greek pulmonary hypertension association, Hellenic PH, and how to support it. This leaflet can be downloaded from the Hellenic PH website at this link.
View the video at this link on the Royal Free London NHS Foundation Trust YouTube channel
A large-scale international survey carried out in 2011 investigated four key areas affected by pulmonary arterial hypertension: physical and practical, emotional, social, and information needs and provided new insights into patients’ and carers’ experiences of living with the disease. Citation “Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”, Loïc Guillevin, Iain
