Small enough to fit in your back pocket, this credit-card sized guide is a handy tool to carry around and give people to read about pulmonary hypertension, its impact on people’s lives and the aims of the PHA UK. Check this resource out on the PHA UK website at this link
The aim of this publication is to guide people affected by pulmonary hypertension through the process of notifying the Driver and Vehicle Licensing Agency, DVLA, of their condition, answer some of the most common questions, and help patients understand what to expect along the way. Click here to order the booklet from the PHA UK
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
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
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 »
Patients can join the Pulmonary Hypertension Association Australia (PHAA) Facebook support group at this link
Pulmonary Hypertension Association Australia (PHAA) Facebook support group Read Post »
Menopause is something that 50% of the population will experience at some point in their life, but it isn’t talked about enough. The PHA UK takes a closer look at menopause, and how it affects women with pulmonary hypertension. Read more at this link on the PHA UK phocusonlifestyle.org web page Four patients have shared
Check the video out on the PHA UK’s YouTube channel at this link
The PHA UK’s website features a page dedicated to frequently asked questions by the newly diagnosed with pulmonary arterial hypertension, including: how to explain to people, in a simple way, what it is, what comes after diagnosis, what the currently available treatments are and what the general outlook for people with pulmonary hypertension is. The
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
As not everyone is comfortable talking on the phone the PHA UK has set up an e-support online service to assist with emotional wellbeing, practical queries and problem-solving, signposting and connections. Contact the PHA UK at support@phauk.org
The PHA Uk’s Listening Line support service offers its members and families dedicated time with a pulmonary hypertension professional to talk through concerns about mental wellbeing. Weekly appointments last for 45 minutes and are available in blocks of six. Read more and book an appointment at this link on the PHA UK website
http://www.phocusonlifestyle.org is the “sister” website to that of the UK Pulmonary Hypertension, PHA UK. It is aimed at patients and peers supporting each other through stories. It also houses written resources covering a very wide range of issues related to living with pulmonary hypertension including:
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
Chronic thromboembolic pulmonary hypertension (CTEPH) is one of the two rare forms of pulmonary hypertension. It is the result of multiple or recurrent blood clots in the lungs. It is within Group 4 of the current official pulmonary hypertension classification. Learn more about CTEPH at this link on the PHA Canada website
The 4-part video series developed by the Pulmonary Hypertension Association of Canada, PHA Canada, covers the following topics: The video series can be viewed at this link on the PHA Canada website
