Mariposa Journal – 2020 winter N.25
Dear Friends,
I am delighted to present the Winter 2020 edition of Mariposa.
No one would have thought at the beginning of the year how special and challenging the coming days would be. On the 10th of March, the World Health Organization declared the COVID-19 outbreak a pandemic. Everybody’s life changed dramatically and established plans were demolished in minutes. Probably the uncertainty was the most difficult to handle.
Sooner or later, however, we learnt to live together with this new situation: we became experts of online tools and successfully ran meetings, webinars and conferences on various virtual platforms. Life did not stop, despite all the strict measures the governments introduced to slow down the spread of the virus, or – as we learnt – “to flatten the curve”. Naturally, lots of things are missing from our life: the networking, visiting and being with our loved ones.
On the other, we can be proud of the lots of activities and achievements of this year and how well pulmonary hypertension (PH) is positioned amongst the rare diseases. We launched our new webpage with new contents and regular updates. All of the scientific articles were either reviewed or a completely new text was drafted. We made our materials more visible and accessible.
A fabulous World Pulmonary Hypertension Day (WPHD) was organized: more than 200 articles, TV and radio interviews were issued and half-thousand views were collected with our webinar on access. We introduced to the “Cure for PH” slogan with the lips and the O2kids video (collecting more than 1 million (!) views) about Thomas, who would like to play with his friends, but due to his PH, his lungs say: “NO”. Later, in autumn we launched a crowd-funding project using the O2Kids concept with same success.
We participated in various questionnaires and were one of the key drivers of the PHCare COVID questionnaire, which collected more than 1000(!) responses from PH patients and carers all over the world: the publication of the results is expected soon.
In collaboration with EURORDIS and ERN-Lung and in cooperation with our valued partners from the medical field, we compiled a patient journey which outline the whole patient path from the first symptoms to the followups. The leaflet also contains what we think is ideal at each stage and the patient needs. We hope that more and more translations of this awareness raising and advocacy tool will be finished in the coming days.
It was very important for us to help our member associations in these challenging times: we sent branded masks to our members and health care providers.
November was also a very busy month: on the occasion of PH awareness month a number of events were organized from Spain to Ukraine, from Bosnia-Hercegovina to Portugal. There were, among others, scientific lectures, a virtual gala “dinner”, a solitary and solidary walk, a breathtaking rowing tour and messages/quotes and videos about COVID and the importance of responsible behavior.
We devoted lots of energy and time to advocacy work as well. We are working closely with big umbrella organizations such as EURORDIS and European Patients’ Forum (EPF) and are pleased to have a good working relationship with European Lung Foundation (ELF) and European Federation of Allergy and Airways Diseases Patients’ Associations. We are members of the steering committee of the newly (re)launched MEP (Members of the European Parliament) Lung Health Group, whose primary aim is to keep airways diseases on the EU agenda. You might search for the detailed report and many photos in this edition of our Annual Pulmonary Hypertension European Conference (APHEC) usually organized in autumn. This conference provided lectures from PH experts and other professionals on various fields like patient empowerment and nutrition to name a few, presentations from the representatives of the pharmaceutical companies and opportunity for PH associations leaders to meet with each other and share experiences. The program usually covered small group discussions and the long awaited Gala dinner with lots of fun and laughter. We hoped that the pandemic will settle and there will be a chance to organize the APHEC and meet each other face to face. Instead, we decided, bearing in mind the safety of patients, carers and their relatives, to organize an online event early next year. I am sure it will be again a very interesting event with lectures about new information, updates on PH management and trials, “coffee rooms” to facilitate discussions amongst the members and many more.
Let me conclude with our appreciation to our medical partners, physicians, surgeons and researchers! Without their hard work and dedication, we would not be where we are now. We also warmly thank our industry partners, who make our work possible and tirelessly support our projects.
Looking forward to next years’ challenges and initiatives!
Gergely Mészaros
Project manager
The journal is available from here: PHAE – Mariposa Journal (2020 Winter N.25)
Editors memo p. 2
In 2020 PHA Europe was present at… p. 4
Upcoming events 2021 p. 9
Report on the online ECRD p.10
Report on the virtual ERS congress p.12
Projects & Initiatives 2020 p.15
AUSTRIA p. 22
BELARUS p. 26
BOSNIA AND HERZEGOVINA p. 27
BULGARIA BSPPH p. 31
BULGARIA PHA p. 34
CROATIA p. 35
CZECH REPUBLIC p. 37
HUNGARY p. 38
ISRAEL p. 40
ITALY-AIPI p. 41
ITALY-AMIP p. 43
LATVIA p. 44
LITHUANIA p. 45
PORTUGAL p. 47
RUSSIA p. 50
SERBIA p. 51
SLOVAKIA p. 54
SLOVENIA p. 56
SPAIN ANHP p. 58
SPAIN FCHP p. 60
SPAIN HPE p. 63
UKRAINE PHA p. 65
UKRAINE PHURDA p. 67
CANADA p. 70
USA PHA p. 72
PHAWARE GLOBAL ASSOCIATION p. 73
ASOCIACIÓN TEJIDO AZUL p. 74
Sponsors p. 75
Sponsors’ corner p. 76
Members of PHA Europe and contact details p. 80