Mariposa Journal – 2022 winter N.29
Dear Friends, Colleagues and Supporters,
It is always a great pleasure to look back and see the ample accomplishments of the past year.
From the previous, summer edition of Mariposa, you could learn about our efforts and success to celebrate the 10th anniversary of World Pulmonary Hypertension Day. You got insight how a single, but very prestigious conference organized in Madrid evolved to a real global event with more than 80 participants. We celebrated the anniversary with a webinar which had a scientific lecture part with those key opinion leaders who participated in the very first conference and the memories of the Spanish PH organization, ANHP – which had a key role in kicking-off WPHD – were also presented. The webinar was the premiere of our anniversary video which highlighted the most eye-catching pictures and original ideas of the previous WPHD celebrations, the cooperation with Ironman triathlon and many more.
The third pillar of this anniversary celebration, on top of the capacity building and awareness raising potential of WPHD, was advocacy: a special event in the European Parliament (Brussels, Belgium) was organized on the 26th of April to launch the revised Call to Action on the unmet needs of patients with pulmonary hypertension position paper. Patient representatives from all over the world, key opinion leaders from the field, and last, but not least politicians (members of the European Parliament – MEP) and decision makers from European institutions attended the event. The result and the messages on access, research, screening, psychosocial support and patient empowerment, however, have effect well beyond Europe and applicable to other parts of the world. The follow-up campaign was a great success also with millions of reaches on various social media channels.
The other major result of the year of 2022 was the release of the revised guidelines on the diagnosis and treatment of pulmonary hypertension. It was the very first time that patient representatives were invited and involved in the task force from the beginning. It is a big honor that one delegate out of two was the representative of PHA Europe. You can learn more details about the work within the task force and the presentation of the new guidelines in this edition of Mariposa.
We have been involved in many initiatives within the field of pulmonary hypertension and in the broader respiratory and rare disease field.
During the years we become an integral part of the scientific societies: we participate and report on our yearly activity in the meetings of the ERS Assembly 13 (pulmonary vascular diseases), furthermore attend as speakers in the annual congresses of ESC and ERS. We are one of the key drivers of the patient empowerment working group in PVRI and patient representative as well as steering committee member of the ERS Clinical Research Collaboration (CRC) on PHAROS – severe Pulmonary Hypertension mAnagement acROSs Europe and participants of the patient forum to ESC. When it comes to rare diseases, European Reference Network on rare lung diseases (ERN-Lung) is one of the most significant institutions. The first 5-year period of ERN-Lung came to an end and a report to European institutions became due, which generates extra workload on our end as being the co-chair of the patient group to the network. In the previous years we worked tirelessly on this very important project and were active partners not only in PH specific matters, but also in cross-disease topics in the so-called functional committees.
EURORDIS is an important partner in ERN-Lung, but we have other fruitful collaborations as well: Rare 2030 is one of these projects which re-started in 2022 and provides excellent opportunity to connect to other rare disease patient representatives and build up a vision for the coming decade for the healthcare of rare disease.
European Lung Health Group (ELHG) and European Lung Foundation (ELF) are another excellent example how patient organizations including rare lung diseases such as pulmonary hypertension and more prevalent ones as asthma can work together. The political launch event of the International Respiratory Coalition (IRC) during the summer in Paris, the presentation of Lung Facts in September by IRC, political statements as well as advocacy events with the involvement of European Union politicians and decision makers under the umbrella of ELHG were the landmark achievements of 2022.
Hot topics of the year were artificial intelligence (AI) and the European Health Data Space (EHDS) which provided an opportunity to collaborate with European Patients’ Forum (EPF) and other umbrella organizations.
PHA Europe applied to be registered as an eligible association at the European Medicines Agency (EMA) –we are extremely happy that in the last days of December our submission was approved!
The partnership with our sponsors has further strengthened. We were participating in educational projects (eg. PH Empowerment network), joining forces in awareness raising activities (eg. PHantasticals), contributing to patient boards of trials and providing the patient perspective in various events (eg. symposia, team building events, internal informative sessions) in 2022. We expect even closer collaboration especially in the field of access and awareness raising.
The year of 2022 was very special as we had two general assemblies (GAM) and Annual Pulmonary Hypertension European Conferences (APHEC). In the beginning of the year, we held the 2021 GAM and APHEC virtually – postponed due to aggravated COVID situation at the end of 2021. We finally managed to organize our most important event of the year, the Annual Pulmonary Hypertension European Conference (APHEC) 2022 in person in Barcelona during November. You can read more about these events and check the best moments in the following pages.
It is not possible to conclude an editorial without mentioning the sad situation in Ukraine. It was PHA Europe who gave the first aid to the member associations to help their patients and we participated in workstreams and make efforts to facilitate the continuous medication supply. We truly hope that the situation will be stabilized soon.
Let me close this editorial with a big applause to our members, patients, family members, caregivers, volunteers, friends and also to our medical partners, physicians, surgeons and researchers, who are with us on this long journey. We re looking forward to an even brighter year of 2023!
The journal is available from here: PHAE – Mariposa Journal (2022 Winter N.29)
Project manager • PHA Europe
In 2022 PHA Europe was present at… p. 4
Upcoming events 2023 p. 17
Updated Guidelines For The Diagnosis… p. 18
Annual PH European Conference 2021 p. 20
Annual PH European Conference 2022 p. 22
O2kids Campaign p. 24
Member Support Program p. 26
Report on congresses and conferences p. 27
Social media activity 2022 p. 30
AUSTRIA p. 33
BELARUS p. 35
BOSNIA AND HERZEGOVINA p. 36
BULGARIA BSPPH p. 38
BULGARIA PHA p. 40
CROATIA p. 41
CZECH REPUBLIC p. 43
HUNGARY p. 45
ISRAEL p. 47
ITALY-AMIP p. 48
NORTH MACEDONIA p. 50
NORWAY p. 52
PORTUGAL p. 53
SERBIA p. 55
SLOVAKIA p. 57
SLOVENIA p. 59
SPAIN ANHP p. 60
SPAIN FCHP p. 62
SPAIN HPE p. 66
SWEDEN p. 68
UKRAINE PHA p. 69
UKRAINE PHURDA p. 71
Media clippings p. 73
Austria p. 73
Bosnia and Herzegovina p. 74
BSPPH Bulgária p. 75
Czech Republic p. 76
Hungary p. 76
Spain ANHP p. 77
Spain HPE-ORG p. 78
Ukraine PHURDA p. 79
Sponsors p. 80
Members of PHA Europe and contact details p. 86