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.

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 (https://www.eurordis.org/) and ERN-Lung (https://ern-lung.eu/). 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.

Partnerships

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.

PHCARE 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. The survey is the result of the collaboration of all of the stakeholders: thanks to the effort of the fellow patients […]