Primary Pulmonary Hypertension (PPH) e. V.

non-profit self help and support association

What is PPH?

Primary pulmonary hypertension is a rare, insidious disease, affecting lung and heart. The narrowing of the pulmonary blood vessels causes an increase of pulmonary artery pressure. This leads to a disturbance of the pulmonary circulation, a reduced gas exchange and an increasing strain on the right ventricle, culminating in right ventricular failure.

People with this condition experience chronic shortness of breath and limited exercise capacity. The disease can take a progressive course and lead to premature death. Pharmakological therapy is complicated and hardly available in Germany. New promising methods of treatment are still at a test stage. For many patients and doctors confronted with this disease, still the only option appears to be a transplantation of the lung or of both, heart and lung.

The first subtle symptoms of less advanced disease, like dyspnea and fatigue, are often of a non-specific nature and therefore not even recognised by the patient himself.

In many cases, medical examination is not very conclusive as well, which leads to makeshift diagnoses like "lack of training“ or "psycho-vegetative exhaustion“. The causes of the disease are still unknown. It can be of hereditary nature and affect subsequent generations of a family. Therefore special attention has to be focused on direct relatives of the patients.

Who are we, and what is our aim?

We are a group of PPH-patients their families and friends who have founded the "Primary Pulmonary Hyptertension (PPH)“ e. V., a foundation dedicated to help patients and their families to cope with their personal fate.

• The foundation wants to establish an information service for patients and other interested people and an international cooperation with different institutions dealing with PPH.

• We want to provide information on symptoms, diagnosis and therapy options and arrange contacts to specialized doctors. For this purpose, the association compiles literature on PPH and gets it translated if the need arises.

• Further, the association wants to contribute to the promotion of medical research on this disease, together with doctors and supported by friends, members and sponsors. New insight in the aetiology is expected especially from molecular genetic studies, currently conducted at Heidelberg University. With the help of grants we would like to support promising scientific projects which otherwise could not be handled.

• One of the priorities is the establishment of a central registry for primary pulmonary hypertension at Giessen University.

• The projects worthy of promotion will be selected by a specialized committee (Medical Advisory Board).

The aim is the establishment of a "René Baumgart-Stiftung“, requiring an investment of DM 100.000,--.

Excerpt of the statutes:

WHO WAS RENÉ BAUMGART?

René Baumgart was a young man who at the age of 19 years was diagnosed to suffer from "primary pulmonary hypertension“ and died of this insidious disease at 23 years of age.

René Baumgart was born in Aalen (Baden-Württemberg, Germany) in 1971. His mother died of primary pulmonary hypertension when he was 10 years old. He had learned the profession of a printer and was just about to pass his trade examination before he died.

His uncle, Bruno Kopp, affected by the disease as well, is the initiator of the foundation "Primary Pulmonary Hypertension (PPH)“ e. V. , with the aim to improve self-help for patients and their families and to intensify scientific research in this field.

With the "René Baumgart - Foundation“ the premature death of René Baumgart shall be given a significance.

Legal background of the association

The association was founded on 11 October 1996. It is headquartered in Rheinstetten, district Karlsruhe, Baden-Württemberg, Germany.

The association is registered at the district court in Karlsruhe.

With correspondence of 11 November 1998, the tax and revenue office Ettlingen has acknowledged the non-profit character of the association. Therefore contributions and donations are tax privileged.

For contributions up to EURO 50.-- the pay-in slip is accepted as donation receipt.

The association acts on a selfless and non-profit-minded basis. The management committee functions are honorary.

Bank account:

Donations are requested on

account No. 8024596

Spar- und Kreditbank Rheinstetten eG

Bank code 660 614 07

Account holder:

Primary Pulmonary Hypertension e. V.

Proposals for awards for scientific studies on the improvement of PPH therapy

and

applications for sponsorship must be submitted to the registered office, accompanied by a brief description of the project, but without a legal claim.

Primary Pulmonary Hypertension (PPH) e. V.

non-profit self help and support association

Registered office:

Bruno Kopp

Wormser Str. 20

76287 Rheinstetten

Germany

PHONE: +49 (0)7242 7294

FAX: +49 (0)7242 95 26 67

E-mail: PPH e V@aol.com

This brochure has been edited with the kind assistance of Dr. Borst, Heidelberg University, and Dr. Olschewski, Giessen University, Department of Medicine.

Copyright: PPH e.V.

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