Quote from Louise’s article for the Dutch PH Association
From November 6 to 10, 2024, it was time to the Annual General Meeting and Conference of PHA Europe. More than 70 delegates from 42 national organizations representing 37 countries participated. The Netherlands was represented by Korrie de Koning and Louise Bouman, secretary and chair of the Pulmonary Hypertension Association.
The conference was attended by representatives of patient organizations, volunteers, medical experts, and representatives from the pharmaceutical and medical industries. The experts and industry representatives shared their experience, knowledge, and the latest scientific and medical advancements regarding the diagnosis, treatment, and additional support for PH patients and patient advocates.
Report
- November 6: The annual activities and social media campaigns of PHA Europe were reported.
- Day Two: The General Meeting took place, during which two new PH organizations, from Kosovo and Cyprus, were accepted as members. Farewell to Eva as president and install temporary new president Zdenka from Croatia and vice president Dora from Hungary. This was followed by a presentation by Matt Granato, CEO of PHA USA, discussing activities in the U.S. and approaches to PH patient care. In the afternoon, there were workshops on HTA (Health Technology Assessment – similar to the work done by the Dutch Health Care Institute) and communication.
- Friday: Presentations were given on clinical research and medical technology from pharmaceutical and medical companies. Important developments were highlighted regarding Group 3 PH: PH associated with lung diseases. Various drugs will undergo Phase 2 and Phase 3 trials in the coming years for people with PH and idiopathic lung fibrosis. Additionally, research involving medication for patients with Group 2 PH—PH related to left heart disease, specifically PH with HFpEF—was also announced. The day concluded with a gala dinner, offering ample networking opportunities.
- November 10: Several presentations were given by PH experts. Dr. Mona Lichtblau spoke about pregnancy and PH. The general advice remains that pregnancy is not recommended for women with PH. However, there are a few exceptions where pregnancy could be an option, provided that the pregnancy and delivery are carefully monitored by a multidisciplinary team. This includes women with a very stable and low-risk PAH profile and women whose PAH is treated with calcium channel blockers (a specific type of PAH). This was followed by a presentation by Prof. Mlakar from Slovenia on CTEPH treatment. When possible, the PEA surgery remains the best option for people with CTEPH. Prof. Ghofrani presented current and future treatments, including Personalized Medicine: through extensive DNA testing of lung vessel tissue, it may become possible to identify the exact medication needed to target a specific type of PH. This is still futuristic but sounds very promising. The day and the conference concluded with the annual photo session and a joint dinner.
Unquote
Link to article on PHA Netherlands website:
Louise Bouman