The World Health Organization‘s World Patient Safety Day recognises the key role patients, families and caregivers play in the safety of health care. Evidence increasingly shows that when patients become partners in their care, significant gains are made in terms not only of safety, but also patient satisfaction and health outcomes. Pulmonary hypertension patients will see their health […]
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
The awareness campaign by ESOT – European Society for Organ Transplantation is very relevant to our community as, despite the huge progresses made in the past 30 years in the field of pulmonary hypertension (new treatments, better treatment management, new/improved surgical techniques, etc), lung transplantation still remains an important treatment option for patients who do
A 2023 survey by the French Agence de la Biomédecine (Agency for Biomedicine) has found that 79% of 16-24 year-olds felt uninformed about organ donation. To address this, a new digital campaign has been launched, targeting young people in a lighthearted and engaging manner to provide information about organ donation without the heaviness typically associated
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)
European Mental Health Week is a pan-European initiative that aims to raise awareness about the importance of mental health in our everyday lives. Set up and run by Europe’s largest independent mental health NGO Mental Health Europe (MHE), the fourth edition will take place from 22 May until 28 May 2023. Pulmonary hypertension has a significant impact on the lives
To commemorate World Pulmonary Hypertension 2023, May 5, physicians at the Medical Faculty, Gazi University – Ankara, will be launching the piece of music they have composed for their patients in the course of a concert. A member of the Turkish pulmonary hypertension association of Turkey, PAHSSc, and a patient, will also be contributing to the
PHantasticals is an awareness raising initiative promoted by Ferrer. It is addressed to patients, caregivers and society large. The website features testimonials from patients and health care professionals as well as useful infographics on pulmonary hypertension (PH), pulmonary arterial hypertension (PAH), and pulmonary hypertension due to Interstitial Lung Disease (PH-ILD) Learn more on the PHantasticals
The Vestingloop has multiple components; running, trailrun and walking. There are different distances so basically everyone can participate. Last year this event had 7.000 participants. The 17th edition is taking place on May 14, from 9 to 4 pm in ‘s-Hertogenbosch, Netherlands, and, thanks to the charity “Heb hart voor longen” (Have a heart for
Active Citizenship Network, together with civic and patient organizations from all over Europe, has taken the initiative to organize – every year since 2007 – the European conference dedicated to the celebration of the European Patients’ Rights Day, based on the calendar of EU institutions. Over the years, the European institutions have always shown great
“Eroi anonimi” (“Anonymous heroes”) is an Italian online platform aimed at the promotion of organ donation among the general population. The slogan of this awareness initiative is “You can be a hero even without superpowers”. The platform features information about the importance of organ donation, on the different procedures that are used in Italy to
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”.
Starting on April 15, 2023, 46 member countries came together to compete in 17 sporting disciplines at the 24th World Transplant Games. This is the first reunion of the community of transplant recipients, living donors, donor families, friends and supporters after four years. For over 40 years, the World Transplant Games have demonstrated that health and fitness
The International Team Development program is a model that enables Team PHenomenal Hope to raise awareness of pulmonary hypertension through endurance racing events throughout the world. The aim of the program is to improve access to care and medications for pulmonary hypertension patients, raise money for medical research into improved treatments or a cure and
Demand for organ transplantation is increasing all over the world, but there are not enough organs available to meet the need. This shortage of organs is now the limiting factor in treating many patients with chronic organ failure and has led to high numbers of patients on waiting lists. Sponsored by the European Directorate for
European Day for Organ Donation and Transplantation, October 10, 2023 Read Post »
Every year on May 5, pulmonary hypertension organizations and groups around the world participate in World Pulmonary Hypertension Day (WPHD) activities to raise awareness of the condition and celebrate the lives of people living with it. In 2012, a program and a scientific symposium were held in Madrid, Spain as the first World Pulmonary Hypertension
World Pulmonary Hypertension Day, May 5, 2024 Read Post »
On May 5 very year since 2012 pulmonary hypertension organisations and groups around the world participate in a global event to raise awareness of the disease. World pulmonary Hypertension Day was initiated by the Spanish pulmonary hypertension association ANHP. Many of the patient associations taking part in the celebrations organise sports events using the slogan
World Pulmonary Hypertension Day 2023, May 5 Read Post »
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 »
Ioanna Alysandratou, a pulmonary hypertension patient and President of Hellenic PH,, is the creator of Pongo, the “rare” purple elephant. Pongo has only a tiny little nostril and struggles to breathe. This is one of the symptoms of pulmonary hypertension, a rare condition affecting the lungs and heart. Pongo has been used in many awareness
