PHA Europe 2012 March
1.ONLY TWO WEEKS TO GO TO THE FIRST WORLDPULMONARY HYPERTENSION DAY!
May 5 2012 will mark a very important milestone for the PH commu-nity worldwide with the first international PH day being organized bythe Spanish PH association ANHP. The event has received the endor-sement of PH associations and leaders from five continents and manyscientific societies and organizations worldwide (including the EUROPE-PEAN RESPIRATORY SOCIETY, EURORDIS, NORD, OPHANET, the EUROPE-AN LUNG FOUNDATION). It has an outstanding programme and a veryprestigious panel of speakers. For further details see: www.wphd.es
2.LAUNCH OF PULMONARY HYPERTENSIONPOLICY BRIEF IN THE EUROPEAN PARLIAMENT
On June 6, PHA Europe will organize the formal launch of its PolicyBrief/Call to Action, which is currently being finalised. The event willtake place in the European Parliament in Brussels, and Austrian MEPs Hannes Swoboda (Head of the Socialist group of the European Parlia-ment) and Karin Kadenbach (MEP Heart Group) have kindly agreedto act as hosts. Other speakers include Paola Testori-Coggi (DirectorGeneral of DG SANCO, Health department of the EU Commission) and PH Roundtable experts Simon Gibbs (Imperial College, UK) and Jean-Luc Vachiéry (Erasme, ULB, Belgium). Participants will include representatives of the EU Commission, Council of Ministers and European Parliament as well as relevant patient and health professionals’ organisations. In advance of the launch event a round of meetings has been set up to present PHA Europe to some key EU stakeholders including MEP’s, EU Commission officials from DG Research, representatives of the European Patients’ Forum and European Public Health Alliance. Pisana Ferrari and I are very honoured to have this opportunity. A full report of these meetings and launch event will follow.
3.INTERNATIONAL PULMONARY HYPERTENSION ONLINE COMMUNITY NOW LIVE!
RARECONNECT, the Rare Disease Communities project, first started with a community for a little known disease group called CAPS. The project is part of the strategic partnership signed in 2009 between Eurordis (European Organization for Rare Diseases) and NORD (US National Organization for Rare Disorders). The 5-language platform now covers 20 rare disease-specific communities, including most recently in March2012, a community for Pulmonary Hypertension. The main idea behind the project is to create an online social network for patients and caregivers living with rare diseases in order toenable the sharing of experiences and increase access to quality information. PHA Europe and the PHA USA collaborated to develop the PH Community along with EURORDIS and NORD. The website is splitinto three sections: What, Meet, and Learn. The Whatsection features patient stories and blog style updates from patients and patient organization representatives. The Meetsection is a forum, moderated by volunteers and offers human translation services across five languages: English, French, Spanish, Italian, and German. Since patients and families are spread thinly across the globe, it is vital to create a spacewhere information can be shared with the best possible translation. The Learnsection is a resource of information in the form of frequently asked questions, documents, recently published news and scientificarticles, upcoming events, and patient organization’s contact information. People interested in discussing PH register on RareConnect. Afterregistering, a user can upload their story on living with the disease through a link in their profile page. The story then automatically is added to the What section and is translated into all of the platform’s languages. http://www.rarediseasecommunities.org/en/community/pulmonary-hypertension
4.PHA EUROPE “POSITION PAPER” ON CHRONICRARE DISEASES
The European Commission and EU Member States has launched are flection process to respond to the growing challenge of chronic diseases. As part of this reflection process, on 15 March the Commission invited stakeholders (e.g. patient organisations, health professional sand healthcare providers) active in the field of on chronic diseases to come forward with their views of the required actions and priorities. A discussion paper, addressing the areas of healthcare, research, information technology and the role of the EU and national governments, provided guidance to the consultation. PHA Europe has responded to the consultation, underlining:
- the need for a more comprehensive approach to chronic conditionsand a focus on less known conditions such as pulmonary hyperten-sion;
- the importance to focus on secondary and tertiary prevention, and not only on primary prevention;
- the importance of psychosocial support;
- the need to recognise the important contribution of patient organisations;
- the need for improved (access to) treatment and more research inthat field;
- the need for more awareness and training of health professionals.
For more information: http://ec.europa.eu/health/major_chronic_diseases/consultations/index_en.htm
Gerald Fischer, President
Pisana Ferrari, Vice President
PHA Europe, European Pulmonary Hypertension Association
PHAE – Newsletter (2012.03.)