PHA Europe Call to Action

See photos of the event on our Facebook page.

PHA Europe decided in 2011 to convene a pulmonary hypertension roundtable to provide a forum for the sharing of PH knowledge and expectations across diverse stakeholders and geographic boundaries. At a meeting in Amsterdam in September 2011, the roundtable members, who reflected a wide range of clinical, patient, research, and industry interests, discussed the need for all PH patients to have access to optimal screening and diagnosis, appropriate treatment, psychosocial support, and integrated care through centres of expertise. Members subsequently agreed upon the framework for a call to action to enhance public awareness about the personal and societal burdens imposed by PH, and to improve the care of persons living with the disease.

The PHA Europe Call to action was presented at the European Parliament on June 6 2012. The launch event was a resounding success. MEP Karin Kadenbach served as host, with support from MEP Hannes Swoboda. Speakers included Roundtable members Gerald Fischer (PHA Europe President), Pisana Ferrari (PHA Europe Vice President), Nazzareno Galiè (University of Bologna), Simon Gibbs (Imperial College, UK), and Jean-Luc Vachiéry (Erasme, ULB, Belgium). Paola Testori Coggi, Director General of DG SANCO (Health and Consumers), addressed assembled guests about EU action in cardiovascular disease and pulmonary illness and Laurent Nicod, Scientific Committee Chair at the European Respiratory Society, lent his support to our initiative. Guests included Members of European Parliament and representatives from DG Research, DG SANCO, the European Patients’ Forum, and the Standing Committee of European Doctors, among others. There is no doubt that we have taken a giant step forward for persons living with PH on 6 June. Our success would not have been possible without the ongoing guidance and support of all our Roundtable members over these past nine months. Our challenge moving forward will be to secure organisational endorsements for our Call to Action, and to disseminate to as wide an audience as possible our key messages: to improve access to expert care, improve awareness and screening, encourage clinical research and innovation, empower patient groups, and assure availability of psychosocial support.

- PH policy brief

- PH Execsummary

- PH CTA Launch event summary

 

Giuliana, Italy
I wish for the tulips I planted yesterday to flower and that I’ll be so busy planning my wedding that I’ll forget about PH!

Giuseppe, Switzerland
Healthy people have a lot of dreams. Sick people have only one.

Radu, Romania
I dream to still be around to see my 18 year old son become an architect.

Nina, Switzerland
I want to be cured and have a pony.

Tuulia, Finland
I hope to live a good life in spite of illness and that one day there will be a cure.

Jennifer, USA
I hope to feel better and to train to be a nurse.

Jana, Slovakia
I am on a waiting list for lung transplantation and hope that the operation will take place in the next 6 months.

Marion, France
I dream to be able to dance and party ! Walk in the mountains… and swim !

Patrik, Sweden
My dream is that a cure will be found for my son and for everybody else who suffers from PH.