Worldwide PH Support Association Conference September 2006

22/09/2006

Inaugural Worldwide PH Support Association Conference brings together Pulmonary Hypertension (PH) patient associations from around the world.

September, Barcelona - The first ever Worldwide PH Support Association Conference has been organised by PHA Europe bringing together 51 representatives from patient support groups or organisations in 24 different countries. Steve Waller and Kay Yeowart from our Association are members of the PHA Europe executive committee and PHA-UK was represented by Iain Armstrong.

The meeting, held in Barcelona immediately following the World Congress of Cardiology, comprised a mix of pulmonary hypertension (PH) lectures and skills-based training to help patient groups in providing support for people living with PH in their country.

Leading pulmonary hypertension experts Nazzareno Galiè, Adam Torbicki, Sean Gaine and Maurice Beghetti - all members of the PHA Europe Medical Advisory Board - presented to delegates on the history of PH, diagnosis and treatment options. Workshops on topical issues such as treating paediatric PH patients and pregnancy/intimacy issues were also well received.

The second day of the conference comprised skills-based sessions including ‘how to get your message across’, harnessing the media, fund raising, effective lobbying and understanding clinical trials.

Leo Kwakkenbos, president of PHA Europe, commented:
“Only about 30 countries in the world have a dedicated PH association. Many of these groups are in their infancy and need support and assistance to help people living with PH in their country. This conference was designed to support these groups in their valuable work.”

The conference was supported by an unrestricted educational grant from Actelion Pharmaceuticals.

Pulmonary Hypertension (PH) is a devastating and incurable disease. It is a relatively rare condition affecting 100,000-200,000 people worldwide but the implications of the disease can be drastic. Without treatment, adults may die within three years and children within 10 months of diagnosis.

About PHA Europe
PHA Europe was founded in 2004 by eleven associations from nine European countries: Austria, Belgium, France, Germany, Italy, Netherlands, Portugal, Switzerland (German speaking) and United Kingdom.

Seven more associations joined in 2005:
Czech Republic, Greece, Ireland, Poland, Romania, Spain, Switzerland (French speaking).

The administrative headquarters of PHA Europe is in the Netherlands

For more information about PHA Europe please contact admin@phaeurope.org or telephone Steve Waller at the PHA-UK office 01709 761450