FOR THE SAKE OF THE FAMILY: THE STORY OF PHeV GERMANY

By Bruno Kopp, President

Editor's Note: PHA is saddened to report the passing of Bruno Kopp on February 7, 2012. Bruno was an amazing leader and visionary in the PH community and he will be missed by all. 

I was very lucky to have an early diagnosis, which had allowed me to live for many years and manage my PH well. In 1996 however, my disease changed for the worse, and I began to search for information. I only knew one other PH patient, my cousin, and I was painfully aware that seven other members of my family had had PH. I was not very hopeful. I began investigating whether an association or some form of support group existed in Germany. I found nothing. My personal health was critical: I wanted to change the way that PH patients in Germany lived.

It was then that I decided to form a PH association in Germany. I believe that a formal association is capable of doing more nationally and having a registered structure allows bringing about greater change. After founding the association, called pulmonale hypertonie e.v (ph e.v), I learned from other patients how lonesome they had become after their diagnosis. In telephone conversations with patients I often heard the phrase “finally, someone who understands what I am talking about.”

Although there were no formal difficulties in establishing the association, it was hard to learn all the new subjects that are involved in creating a new association, and it’s important to do things correctly from the start. Soliciting the help of reliable persons experienced in these areas, if you know them, is also very helpful. At first I did not understand this field, or how to speak with the different parties. Thankfully, one of the PH specialists in Germany, Prof. Horst Olschewski, MD, was there to act as my personal mentor. With his help and with my friends, we accepted the challenges that we faced.

Soon inquiries came from all over Germany. Patients and their family members were glad to have the contact possibilities we offered. Our first patient meeting turned out to be a great success. That first meeting was more like a big family reunion; very personal and emotional. Everyone who participated was so happy to be a part of it and they all were anxious for the next one. The medical lectures given by doctors were very informative and the attendees were so grateful for the information. We also got very good feedback after our first newsletters went out. Thanks to the help of the doctors working with us, the newsletters were informative, medically correct and reliable. The association was the only point of contact in Germany for PH and newsletters and brochures were the best way of getting information about the disease out to the public.

The organization’s finances began to steadily increase through membership dues, donations and public funding, so we were able to initiate more projects. In 2001 ph e.v. established a foundation named “René Baumgart-Stiftung” for research in the field of pulmonary hypertension. René Baumgart was my nephew, whose mother died from PH, and sadly he later succumbed to the illness as well. Within the first five years, donations for the René Baumgart-Stiftung Foundation reached 70,000 Euros ($105,000 USD) and were used to establish endowment funds for research.

Since the beginning, we have had very good cooperation with our specialized clinical centres and with doctors, in addition to the pharmaceutical industry. We also learned a lot from umbrella organizations around Europe. My initiative to get to know patients and other associations around Europe led to the foundation of PHA Europe, where I serve on the Board of Directors and am currently vice-president and acting president.

I believe that the backbone of our association lies in the continuous, professionally funded information service provided by our newsletter; our website homepage; the building of a support structure (regional and national chapters); regional meetings; and an annual nationwide patient meeting. Volunteer leaders of the regional groups and board members supplemented by skilled employees in the national office help to personalize the structure. Knowing that there is direct contact with scientists and physician specialists, receiving first-hand information, as well as the ability to turn to the association with questions such as those concerning social benefits creates trust and a feeling of affiliation among PH patients in Germany.

The awareness-raising work done by ph e.v by means of our homepage and work with the media has increased the number of inquires. Our participation in the nationwide network of support associations as well as participation in projects that affect health policy in Germany presents us to the public as an agile and active association, working for the benefit of PH patients throughout our country.

My life, as well as that of other patients in Germany, has changed considerably since the founding of the association. For me, the association has developed into my second profession. I want to sincerely thank all of the volunteers and employees of ph e.v as well as all the doctors, therapists and sponsors who have tirelessly worked with us and who continue to do so. Thanks to them, we are changing the lives of PH patients in Germany – helping them to be less alone, more informed and enjoying a better quality of life.

© 2006

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.