PHURDA took part in the Annual Pulmonary Hypertension European Conference

PHURDA took part in the Annual Pulmonary Hypertension European Conference

Meeting in Barcelona during the Annual PH Conference, organized by Hypertension Association Europe, inspires us and provides confidence in the future of PH patients. This year, the conference was attended by representatives of 23 countries. Associations of European countries are part of the Pulmonary Hypertension Association Europe as full members. This year, new associations from Argentina, China and Japan were accepted, which became associate members of PHA EUROPE. It was very nice to meet the presidents of these associations and hear about the situation of PH patients in their countries! We are glad to meet you!

¡Estamos encantados de conocerte!

Along with the fact that we represented the Ukrainian PH community, we also tried to learn more about the situation of rare and respiratory diseases in European countries. We talked about the excellent learning platform for patients and carers as the European Patient Ambassador Programme. “For me personally, the platform has become a kind of “elevator”, thanks to which I am a member of the ELF Council”, – said Oksana Kulish. And also, we talked about the newly created PH PAG at the European Lung Foundation. The creation of such a group is an important step in shaping and strengthening the voice of the European community of respiratory diseases, in particular PH.

More about EPAP is here:…/european-patient-ambassador…/

More about PH PAG is here:…/join-patient-advisory-group/ 

The second day at #APHEC conference was marked by presentations from pharma companies that talked about their achievements. The first company was AEROVATE. They represent a new inhaled drug – Imatinib, which can be considered a long-term rescue medicine. Inhalation should be done twice a day, in the morning and in the evening.
What is the patient expertise for Aerovate? Do they plan to involve Eastern European patients in this discussion?
– An expert is a patient who is ready to share his life experience, his story with others; a patient recommended by the association being consulted, in this case PHA EUROPE. The company will consider attracting patients from Eastern Europe to fill this gap.
The drug is currently being studied in adult patients. What to expect in pediatric patients?
– everything will depend on the results and data obtained in the course of clinical studies, which are currently taking place for adult patients. The company is following the process very carefully and meticulously at this stage.

In addition to pharmaceutical companies, 8 speakers were invited to the conference, including Adam Torbicki and Ioanna Pepke-Zaba. These speakers were special to Ukraine because they actively helped patients in the first months of the war at the beginning of the full-scale invasion of Russia. Humanitarian aid became possible thanks to Polfarma, Janssen, Zentiva, Lyons Club Denmark/Gdansk, New York Presbyterian Hospital.
One of the speakers at the conference was the representative of ERN Lung Gergő Mészáros. In his presentation, he mentioned Ukraine’s membership in ERN Lung and the possibility for doctors to participate in the ERN Lung Academy.
The war made us stronger and more visible on the European and world medical scene.
We will definitely win! Glory to Ukraine!