The Pulmonary Hypertension Association‘s CEO Matt J. Granato shares the association’s plans to celebrate the 2024 World Pulmonary Hypertension Day and invites the global PH community to mark this longstanding and important awareness campaign around the theme of “unity”. Read more at this link on the PHA website
“Pongo” serves as the mascot of the Greek Pulmonary Hypertension Association. This elephant doll features a unique characteristic: a minuscule nostril that impedes its ability to breathe adequately, leading to its striking purple hue caused by oxygen deprivation. It was create to educate children to recognize a physical diversity that may not always be visible.
The 2023 awareness campaign “Viaggio alla scoperta della PAH” (A trip to discover pulmonary arterial hypertension), has won the Life Sciences Excellence award for the “Best Patient Advocacy Digital Campaign of the Year”! A very important recognition for this collaborative effort by AIPI Italian Pulmonary Hypertension Association, AMIP Associazione Malati Ipertensione Polmonare, GILS – Gruppo Italiano per la
Vittorio Vivenzio, President of the Italian Pulmonary Hypertension Association AMIP ODV, has released a new educational video on the association’s social media platforms. The video offers an easily comprehensible and “light” approach to understanding the intricate mechanisms behind the condition and the challenges of obtaining a timely and accurate diagnosis. It underscores the significance of
Throughout the month of November 2023, the Pulmonary Hypertension Association (PHA) USA shared the stories of people who “Live PHearlessly” to raise awareness of pulmonary hypertension. More than 30 people with the condition participated. See their stories at this link on the Pulmonary Hypertension Association website. Coupled with those stories, the Pulmonary Hypertension Association also
The steering group of the European Society for Organ Transplant (ESOT) patients’ inclusion initiative invites European transplant patient organizations to endorse and spread the call: Monitoring health after transplantation: A call for a European effort to collect follow up data on transplant recipients and living donors. This call urges organizations dealing with transplantation to work
Today, on ‘World Mental Health Day’, an international day dedicated to global mental health education, awareness, and advocacy against social stigma, it’s important to recognize the profound impact of conditions like pulmonary hypertension. Beyond the physical limitations, individuals grapple with uncertainty about the future, potential challenges in continuing their careers, the necessity of regular medical
Huge success for this year’s World Pulmonary Hypertension Day on May 5! The summer edition of the Mariposa Journal reports on the exciting events organised in 22 European countries to celebrate this occasion, and on the social media campaign which accompanied it, which reached an estimated 6 million individuals worldwide. World PH Day is a
We were drawn to some posts shared by the ANHP on LinkedIn to send positive messages to patients. It features: – Concise, engaging, and encouraging messages– Appealing, evocative, and fun visuals We have taken four of the posts as examples and here are the messages: We are going slow but we are moving forward (turtle)
The Pulmonary Hypertension Awareness Day 2023 toolkit is now available at this link On on May 5 very year since 2012 pulmonary hypertension organisations and groups around the world participate in activities to raise awareness of the disease. Many of the patient associations taking part in the celebrations organise sports events and using the slogan “Get breathless for PH”.
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. Rare Disease Day was set up and is coordinated by EURORDIS, the European Organisation for Rare Diseases, and 65+ national alliance patient organisation partners. For the 2023 edition 600+ events were held worldwide in 106
International Rare Disease Day, February 29, 2024 Read Post »
