Advocacy /policy work

We participate in a great number of projects, partnerships, working groups and various task forces with the aim of ensuring better quality of life for the patients, best treatment and ultimately a cure for PH.

Breathe Vision 2030

  [The] (…) paper aims to create a Breathe Vision for 2030, reflecting the changes that lung patients want to see in their lives. The importance of these changes is reflected in the impact that lung health has on our general health. Lung health, particularly in children, is such an important factor in our current […]

Patient journey for PH patients

The original idea of building-up patient journeys for various rare lung diseases came up as a result of the collaboration between EURORDIS ( and ERN-Lung ( We have not developed such a material previously and thought that the strategic and analytical approach this initiative provides is beneficial for the whole PH patient community.

European Health Data Space

The European strategy for data proposed the establishment of domain-specific common European data spaces. The European Health Data Space (‘EHDS’) is the first proposal of such domain-specific common European data spaces. It will address health-specific challenges to electronic health data access and sharing, is one of the priorities of the European Commission in the area […]


In course of the advocacy work, PHA Europe is collaborating with many stakeholders, including but not limited to other non-governmental organizations, patient associations, consortia, scientific and professional associations, policy makers, decision making and health technology assessment bodies.

Useful links

Please find below some useful links. You can find sources of information about PH associations, other non-profit organizations as well as authorities, scientific societies and clinical trial registries.

PH CARE patient questionnaire

In order to better understand the COVID pandemic effects on the care of PH patients and to help prepare for future challenges, a patient-centric survey has been started in the last days of May 2020. We received a great present for our #WorldPHDay2021 celebration from the Orphanet Journal of Rare Disease (OJRD): the long awaited […]
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