Don’t let a diagnosis of pulmonary hypertension make you think that your travel days are over! Traveling is still possible with some additional planning. Check out the PHA’s dedicated website section to gain insights on what factors to consider during your travels. The Pulmonary Hypertension Association page includes advice on different forms of travel: Learn […]
The PHA UK has partnered with psychology researchers from Cardiff University and Nottingham Trent University to conduct a study on a new self-help program for individuals with pulmonary hypertension to manage depression. The study aims to test the effectiveness of a series of self-help booklets and eventually make the program widely available. Learn more at
The AfPH’s second webinar in the six part series exploring the innovations introduced by the 2022 ESC/ERS clinical guidelines on pulmonary hypertension was held on July 27. Patient-Reported Outcome Measures (PROMs) are currently underused in the context of pulmonary hypertension. While their importance in capturing the patient perspective and improving patient care is well recognized,
“PARTNERING WITH PATIENTS AND SHARED DECISION MAKING: A NEW PARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 You can also download the slides, recording and text of transcript in pdf format in several languages at this link on the PH-KSP. TRANSCRIPT DISCLAIMER: Despite every effort to ensure the accuracy of this transcript, we strongly encourage
HTaPFrance HTaPFrance has just issued its indications on how to cope with warm weather when you have pulmonary hypertension. It recommends great caution as heat and sun can be dangerous. Read more on the HTaPFrance website at this link PHA The PHA offers supplementary recommendations for effectively managing pulmonary hypertension medication in warm weather conditions.
This year the HTaPFrance’s Annual General Assembly was held on the 10th of June via video conference, bringing together approximately 45 people. he association operates thanks to two employees and of course volunteers who dedicated 1 093 hours of volunteer work in 2022. These volunteer hours are valued in the accounts and represent €12,339, or 0.7 full-time equivalent. HTaPFrance keeps track of volunteer hours, because
The long-awaited traditional AIPI meeting with patients and their families finally took place on June 11, 2023, marking a joyful reunion for patients and their family members after the challenging period of COVID-19 restrictions. The meeting kicked off with a presentation by the President, Pisana Ferrari, about the various activities and initiatives undertaken by the
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 founders of “My PH Family” believe that educating children and families about pulmonary hypertension in a fun and engaging way can help alleviate some of the anxiety associated with the diagnosis. This is why they have created the Kiki the Koala series which provides easy-to-understand information about the condition and offers advice on living
Take a moment to check out the latest updates in the PH-KSP’s “News” section: 🤝 Recording and slides of the AfPH live webinar on “Partnering with patients and shared decision making in PH care” now available Link 📋 PHA UK launches survey to investigate how patients feel about their clinical data being accessed by researchers
Noteworthy PH Moments: Highlights from June 5 to 11, 2023 Read Post »
We are delighted that around 50 people attended our webinar live across all 3 platforms (LInkedIn, Facebook and YouTube) and that the event has received 100s of views in the following days. We had good engagement from the audience and we are looking forward to the next event! We take the occasion to warmly thank
Sharing from the PHA’s Instagram page the news that that the “Safe Step Act” is moving to the US Senate floor for the first time and aims to limit step-therapy requirements. Current insurance policies in US require people to try less expensive treatments than what their doctors prescribe first. The PHA points out that for
Here are the links to join: If you wish to join all you need to do is go to any of these links at 4.30 pm CEST on June 6. LinkedIn https://www.linkedin.com/events/7062051293736898560/comments/ Facebook Live https://www.facebook.com/events/1015166536534693 YouTube https://www.youtube.com/watch?v=x6wJlY9Kz_o PH-KSP website https://ph-ksp.com/our-webinars/ The recording, slides and transcript will be made available shortly after the webinar. Translations of the transcript will be
Two chronic thromboembolic pulmonary hypertension (CTEPH) patients, Gabriele and Rishabh, from different corners of the globe, respectively Italy and Singapore, have come forward to share their remarkable stories of resilience, strength, and hope. “My Journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH)”, Gabriele Valentini, May 29, 2023 “From Diagnosis of CTEPH to Triumph: Rishabh’s Journey of
Key PH Moments You Don’t Want to Miss! May 29- June 4, 2023 Read Post »
On 13 April 2023 the Asociación Nacional de Hipertensión Pulmonar, Spanish pulmonary hypertesion association, hosted a webinar titled “Pulmonary hypertension and nutrition: can diet help in the treatment of PH?”, featuring as speaker Ms Marina Sisso, a dietician and clinical nutritionist at the Hospital Clínic de Barcelona, specialised in the area of Pulmonology and Cardiology.
Save the date! The Dutch Pulmonary Hypertension Association is delighted to announce its 2023 Annual Patient Meeting, taking place in Nijkerk on November 11, 2023. This year’s theme is “Moving forward together,” reflecting the spirit of unity and progress within the pulmonary hypertension community. The event features a dynamic program, including informative presentations on clinical
Team PHenomenal Hope, a US national nonprofit advocacy organization for pulmonary hyeprtrension, proudly unveiled its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in pulmonary hypertension on May 12, 2023. The symposium will be held on Friday, December 15, 2023, in Boston, Massachusetts, USA Experts in the field are invited to share original research by August
Warmest congratulations to PHA Canada for its 15th anniversary! Check out their anniversary video on YouTube In English at this link in French at this link PHA Canada’s National PH Community Conference is coming up soon, on June 9-10, in Ottawa. Select conference sessions will be made available via Zoom. Here is the link to
Thanks to the enthusiasm of one of its members, HTaPFrance will participate in the Lyon Heroes’ Race (Course des Héros) taking place on Sunday June 25, 2023, in the Parc de Gerland in Lyon. Participants can either run or walk (8 km race, 5 km walk and 2 km discovery course). The aim is to
In this video, Chermaine Kwant, a registered dietician who has her own experience of living with pulmonary hypertension and lung transplant, explains how “one-pan meals” could be the key to making nutritious food without feeling drained. Watch the video at this link Iti s possible to activate subtitles in many different languages Disclaimer While every
