Mariposa Journal – 2021 winter N.27

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Dear Friends, Colleagues and Supporters,

It is with mixed feelings that I started writing this editorial. We had hoped that thanks to various precautionary measures we would be in the position to organize our long-awaited Annual PH European Conference again in person this fall. Unfortunately, COVID statistics became unfavorable and also a new variant was revealed: most of the countries started closing down their borders which resulted in the postponement of our event. It seems uncertainty will stay with us for a longer period of time and we need to cope with and prepare for this unprecedented situation.

On the other hand I am delighted to let you know that we have never closed such an active and successful year as 2021.

We kicked-off the year with the launch event of a very important position paper “Towards a European Health Union – BREATHE Vision for the future”. We were a presenter and a panelist in the online event hosted by members of the European Parliament (MEP) and organized by MEP Lung Health Group.

We launched the renewal of our position paper, Call to action early this year and are progressing nicely with the review. We are lucky to have all the key opinion leaders from the medical teams, our partners from the pharmaceutical companies, and representatives from the wider PH community and beyond. We plan to relaunch it next spring and hopefully it will be an in person event hosted by MEPs in the European Parliament.

Rare Disease Day was celebrated online in February and many activities were conducted also by our members to mark this event.
We managed to organize our first-ever virtual Annual PH European Conference 2020 in the early days of March. You can learn more about it in this journal. Also, in March we participated as panelists in the ERS Live Vision, which is the respiratory channel of ERS. The main theme was how to cope with the challenges COVID brought to the rare lung disease patients. Still in March we participated in the board meeting of ERN-Lung.

Tremendous effort and work were invested into this year’s World PH Day celebration during April and May. A separate edition of Mariposa is dedicated to this series of events, but the main activities included the building of a new dedicated webpage, co-organizing high profile policy event on research with MEPs (Members of the European Parliament), launching an online petition, organizing five webinars in various languages and delivering a toolkit with detailed social media timeline in English and Spanish, are worth being mentioned here again.

We received a nice gift for WPHD: the result of our PH care COVID survey – which was truly an international project and collaboration with ERN-Lung, ESC, ERS and ELF and which collected more than 1000 responses – was published mid-May in the Orphanet Journal of Rare Diseases.
Despite the challenging spring we managed to collaborate with EU-IPFF (European umbrella organization of pulmonary fibrosis) and participated in their virtual European patient summit, as panelists, in April.

We participated in many online conferences and webinars and shared the information we gained with the PH community. The EURORDIS membership meeting was again an important source of best practices from other rare diseases. ERS Digital Health Summit provided interesting insight into new technical developments. EPF (European Patient Forum) organized a series of webinars on artificial intelligence.

Last, but not least, ERS and ESC annual conferences and the CTEPH conference organized by ICA (International CTEPH Association) are must-visit events where state-of-art management of PH is provided by the key opinion leaders.

We continued our close collaboration with many – both scientific and patient led – stakeholders, throughout the year and we even managed to enlarge our collaboration with other non-governmental organizations. We became members of and are co-leading a patient-empowerment initiative within Pulmonary Vascular Research Institute (PVRI). Most recently we joined the ESOT-ETPO (European Transplant Patient Organizations) alliance. We conducted a lot of very successful communication campaigns. O2Kids campaign was relaunched, the main target is raising money to make the dreams of children living with PH come true. We have already helped many kids and made them smile: this campaign gave us the idea and dedication to give a helping hand to many more. We ran many social media campaigns to raise awareness of PH: #PHLeadersStory to introduce the leaders of our member associations, #goodPHNews to collect and share all the achievements of our members which we can be proud of.

We celebrated PHAwareness month in November with the participation as panelist in the First Forum of the Latin-American PH coalition, with ready-to-use and easy-to-share materials and with a very touching video: you can get to know three incredible people from the ‘PH no limit’ footage.

We must not forget the support we provide to our member associations under the umbrella of the Capacity Building Program. Last year we re-built our homepage which gave the idea to make it happen to our members as well. The template was ready, the capacity was available and many member associations were keen to start working on their own new webpage. Thanks to this program we managed to deliver new webpages to Hungary, Finland, Moldova, Italy (AIPI) and Austria and more to come!

Let me conclude this editorial with a big thanks to our members, patients, family members, carers, friends and also to our medical partners, physicians, surgeons and researchers, who are with us on this long journey. Without their assistance we would not be where we are now. We are very grateful to our industry partners, who continue to support our work.

The journal is available from here: PHAE – Mariposa Journal (2021 Winter N.27)

Gergely Meszaros
Project manager
PHA Europe

Contents

In 2021 PHA Europe was present at… 4
Upcoming events 2022 14
Annual PH European Conference 15
Report on the Virtual ERS Presidential Summit 17
Report on the Virtual ESC Annual Congress 19
Report on the ESOT Congress 21
Report on the Virtual ERS Annual Congress 23
Report on International CTEPH Conference 25
Projects and initiatives 2021 27
Social media activity 2021 33
Austria 35
Belarus 39
Bosnia and Herzegovina 40
Bulgaria BSPPH 43
Bulgaria PHA 46
Croatia 47
Czech Republic 51
Finland 53
Hungary 55
Ireland 57
IsraeL 59

Italy-AIPI 61
Italy-AMIP 62
Lithuania 63
North Macedonia 66
Moldova 67
Poland 69
Portugal 71
Russia 75
Serbia 76
Slovakia 80
Slovenia 82
Spain ANHP 84
Spain FCHP 88
Spain HPE 93
Sweden 96
Ukraine PHA 97
Ukraine Phurda 102
Media clippings 106
Sponsors 119
Sponsors’ corner 120
Members of PHA Europe and contact details 124