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 »

A research aims to determine reliability of blood samples taken by PH patients at home for remote monitoring, January 29, 2022

New research at Royal Brompton and Harefield hospitals in the U.K. will evaluate whether the levels of NT-proBNP, a heart damage biomarker that serves as a prognostic marker of pulmonary hypertension, can be accurately measured in a finger-prick blood sample that can be taken by patients at home and sent by mail to laboratories (this

A research aims to determine reliability of blood samples taken by PH patients at home for remote monitoring, January 29, 2022 Read Post »

First-ever UN Resolution addresses the challenges of the 300 Million Persons Living with a Rare Disease

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

First-ever UN Resolution addresses the challenges of the 300 Million Persons Living with a Rare Disease Read Post »

An international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic, Orphanet Journal of Rare Diseases, May 2021

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,

An international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic, Orphanet Journal of Rare Diseases, May 2021 Read Post »

Joint statement on the need for improved protection and prevention for immunocompromised patients in the context the COVID-19 pandemic, European Society for Organ Transplant (ESOT)

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

Joint statement on the need for improved protection and prevention for immunocompromised patients in the context the COVID-19 pandemic, European Society for Organ Transplant (ESOT) Read Post »

May 20, 2022 EURORDIS live webinar on equitable access to COVID-19 vaccines for vulnerable populations. Recording now available

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

May 20, 2022 EURORDIS live webinar on equitable access to COVID-19 vaccines for vulnerable populations. Recording now available Read Post »

Participation in pulmonary hypertension support group improves patient-reported health quality outcomes: a patient and caregiver survey”, Pulmonary Circulation

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

Participation in pulmonary hypertension support group improves patient-reported health quality outcomes: a patient and caregiver survey”, Pulmonary Circulation Read Post »

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