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Verkosto on koostanut Harvinaisen hyvää elämää -valokuvanäyttelyn, joka kiertää useissa kaupungeissa vuoden 2022 aikana. Valokuvanäyttelyssä on esillä 12 harvinaisesti sairaan ihmisen valokuva ja heidän tarinansa.  Valokuvat on ottanut valokuvaaja Valtteri Nevalainen. Näyttelyn tarkoituksena on tuoda esille harvinaisuuden monimuotoisuutta, ei diagnooseja. Tarinoissa keskitytään valokuvien ihmisiin, heidän iloihin ja haasteisiin. Tavoitteena on lisätä tietoisuutta harvinaisista sairauksista ja niiden vaikutuksista jokapäiväiseen elämään.

Pulmonaalihypertensio (PAH) on hyvin edustettuna näyttelyssä. Näyttelyyn osallistujista kolme sairastaa keuhkovaltimoverenpainetautia.

Lisää valokuvanäyttelystä ja näyttelypaikoista voit lukea täältä: Harvinainen valokuvanäyttely – Harvinaiset

Mikäli haluaisit tilata näyttelyn esimerkiksi yrityksesi, oppilaitoksesi tai järjestösi tilaan, ota yhteyttä Harvinaiset-verkostoon: harvinaiset@harvinaiset.fi

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

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Dear Friends,
I am happy to share with you the Summer 2021 edition of Mariposa.

As you might know this edition is solely dedicated to World PH Day events all over the world and provides a nice overview of what has been achieved on a local, European and global level.

This year was challenging again due to the COVID pandemic and made the proper planning difficult, but we learnt from the previous year and were prepared for a plan “B” if needed.

There was a great variety of events organized by member associations: in some countries it was possible to run inperson events, however in other countries the activities were limited to the online world. We were also witness to a nice combination of both types of initiatives. As of this year PHA Europe has taken over the global coordination of World PH Day events, which is a big honor, but on the other hand a great responsibility and a lot of work.

As part of this work, we have re-launched the WorldPHDay.org website which is a hub with ready-touse materials in English and Spanish. The site contains an interactive calendar about events (with login details) organized all over the world, and information about pulmonary hypertension, the participating partners and also our sponsors, who made World PH Day celebrations possible this year.

You can learn more about the visuals we prepared and made available to the PH community in this edition. We managed to create enormous interest towards our messages and the online reach of 9,4 million (!) and almost 9 million (!) on Facebook and Instagram, respectively, was far better than our expectation. These results are even more impressive if we take into account how the social networks are overloaded with contents nowadays. On top of raising awareness of pulmonary hypertension we were busy with advocacy activities. You can get insight in the following part of Mariposa into an important initiative of an online petition we launched some days before World PH Day: we called upon the decision and policy makers to take immediate steps and address unmet needs of patients living with pulmonary hypertension. The call covers, among others, action on access, transplantation and holistic care.

But the online petition was not the only advocacy activity we planned and organized this year. You can learn more about the very high-profile online event co-organized with the European Respiratory Society in the next section. With the participation of members of the European Parliament, a representative from the European Commission and key opinion leaders from the medical field of PH an online webinar was held by the MEP Lung Health Group on Accelerating EU research for rare diseases – the case of pulmonary hypertension. We were happy and very optimistic that we have had the chance to include the patient perspective in this event by providing a patient journey. The webinar was recorded and made available on our social media channels. We plan to follow up on this event and make further progress on the research for the benefit of patients.

Some years ago, we started to include patient empowerment elements into World PH Day events. This year we were extremely successful and organized and co-organized five webinars in various languages on different topics. We put emphasis during these webinars on quality of life measures and everyday life’s problems, but also touched upon the effects of COVID and congenital heart disease on PH patients. All the webinars were recorded and made available on our youtube channel. We hope that they will be important and valuable resources for the PH community.

The staff members of PHA Europe have also shown their dedication to World PH Day and marked this very day in different ways: some of them got breathless for PH in trail running and triathlon races, others turned into our color of blue or wore our branded T-shirt and had fun. The World PH Day events always have the same message: we are a big family! To facilitate interactions between the patient associations from all over the world, we re-opened our virtual centre previously used for the Annual Pulmonary Hypertension European Conference and made fine-tunes, provided new materials and resources and held a meeting at our famous virtual pool!

Let me conclude this editorial with a big applause to the patient associations, patients, family members, carers, friends and last, but not least to our medical partners, physicians, surgeons and researchers, who joined us to celebrate WPHD events this year. Without their dedication we would not be where we are now. Special thanks go to our industry partners, who make our work possible and support our projects. I am eager to learn about next years’ WPHD plans and projects and looking forward to the fruitful collaboration!

The journal is available from here: PHAE – Mariposa Journal (2021 Summer N.26)

Gergely Meszaros
WPHD Project manager • PHA Europe

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Suomen PAH-potilasyhdistys järjesti pitkän odotuksen jälkeen vertaistapaamisen Helsingissä. Korona-rajoitusten takia tapaaminen jouduttiin siirtämään useamman kerran, kunnes vihdoin pääsimme kohtaamaan kasvotusten toisemme 12. – 13.11.2021.

Yhdistimme ensimmäistä kertaa voimamme Hengitysliiton kanssa. Sillä on vuosien kokemus johtavana kansallisen tason organisaationa, joka kutsuu PAH-potilaita vertaistapaamisiin. Jaamme yleisesti ottaen toimintamme tavoitteet, joten hyödymme molemmat yhteistyöstämme. Lisäksi saimme runsaasti taloudellista tukea Johnsson&Johnssonin Janssen Cilag Oy:lta.

Tapaaminen oli kaksipäiväinen ja se järjestettiin kauniissa merenrantakonferenssikeskuksessa, Hotelli Rantapuistossa. Ensimmäisenä iltana osallistuimme Janssenia edustavan lääkärin luennolle, jossa kerrottiin viimeisimmistä toimintasuunnitelmista PAH-potilaiden hoidon hallinnassa. Tämän jälkeen oli illallinen ja kauan odotettua keskustelua ja ilonpitoa kuohuvan kera!

Toisena päivänä käsiteltiin itsehoitoa. Ensimmäisenä ohjelmassa oli loistava puhe ja keskustelua psykoterapeutti Päivi Hietasen kanssa psyykkisen hyvinvoinnin tärkeydestä. Tätä seurasi hengityselinsairauksiin erikoistuneen fysioterapeutti Herkko Ryynäsen yhtä upea puheenvuoro. Saimme tietoa viimeisimmistä tutkimuksista, jotka käsittelivät fyysisen harjoittelun tärkeyttä. Sen jälkeen pääsimme vielä käytännössä kokeilemaan harjoitteita. Punnerrusten ja kyykkyjen teko raittiissa ulkoilmassa herätti varmasti meidät kaikki ja sai hymyn huulillemme! Lounaan jälkeen hyvästelimme toisemme toivoen, että näemme taas pian!

Kuva: Sonja Koski

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Let me welcome you to the pages of our newest edition of Mariposa: you can learn more about this year’s World Pulmonary Hypertension Day (WPHD 2020). WPHD has a long history of celebration: in the first year, in 2012 a conference was organized in Madrid. We have been organizing these series of events for the
7th consecutive year and thought we can build on the experiences we gained from the previous years. …but suddenly, in the middle of the preparation for this year’s activity, on Wednesday, the 10th of March, the World Health Organization declared the COVID-19 outbreak a pandemic.

You can learn more about the series of online WPHD events in this edition of Mariposa: PHAE – Mariposa Journal (2020 Summer N.24)

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