Röhrenpost 30

Establishment of contact between achalasia-affected persons

The possibility to get in contact personally with other achalasia patients in order to exchange experiences is probably the self-help group’s most important purpose. Small advices from other affected persons can possibly help to cope with the daily discomfort achalasia brings along.

About 820 achalsia-affected persons from all over the world made contact with our self-help group, most of them coming from Germany, Austria, the Netherlands and Switzerland.

But some are also from Poland, Croatia, Italy, Spain, France, Turkey, Belgium, Luxemburg, Great Britain, Mexico, USA and New Zealand.

We currently have about 395 members.

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Organization of information events for achalasia patients

Combined with the regular frequent meetings, separate events with achalasia-experienced physicians can be attended (in the course of the frequent meetings).

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How to make contact

People with achalasia have the possibility to address to the group (by e-mail, telephone, etc.) who can then answer the questions directly or forward them to specialists.

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Registered organization

The idea behind the foundation of a non-profit organization was on the one hand, to be a “collective voice” (motto: “Together we’re strong”) and on the other hand, to try to collect financial means in order to support research projects or to tackle new research plans.

Furthermore, the Selbsthilfegruppe Achalasie e.V. files applications with the health insurance companies and provides its members permanently with latest information. Due to the co-operation with several clinics specialized in achalasia, the self-help group is always up-to-date. Its medium-term objective is to nationwide call the circles of experts’ attention to the results of the studies. The group organizes a major international achalasia symposium every other year. That way, it is the Achalasie-Selbsthilfe e.V. where all the threads come together.

Your membership is not mandatory in order to be able to profit from our self-help group, but your membership fee does support the group’s activities.

The organization is registered at the Amtsgericht Münster (district court) since 12th June, 2002 (VR4304).

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The advantages of an

Achalasia-Selbsthilfe e.V. membership

knowledge of the up-to-date reports from people with achalasia

receipt of an emergency health card

frequent information

receipt of the book “Life with Achalsia” (3rd edition) (in German)

invitation to activities and meetings

possibility to contribute actively within the scope of a private social commitment

the membership fee financially supports projects (e.g. preparation of documents, activities, studies…)

Registered persons with no membership status in the self-help group merely receive invitations to activities and the up-to-date reports of people with achalasia.

When dealing with chronic diseases, not only the patients are affected but also their partner and family.

Our activities for the self-help group are a volontary social commitment.

 

We are member of the “Allianz chronischer seltener Erkrankungen e.V.”= ACHSE (German National Alliance for Chronic Rare Diseases).

Achalasie Selbsthilfe e.V. was accepted into the ACHSE organization on Friday, 24th October, 2008.

The German National Alliance for Chronic Rare Diseases (ACHSE) e.V. is a network of patients’ organizations of children and adults with chronic rare diseases and their families. People suffering from a rare disease have to cope with very special problems.  A lot of them are individual problems concerning the respective disease, some, though, are simply caused by the very rareness of the disease. The diagnosis alone can take excruciatingly long. Due to the fact that not many persons are affected, it is not profitable for physicians and the pharmaceutical industry to do the respective research. As a result, medication and other therapeutic methods are lacking. Unfortunately, there are only a few physicians who have more than merely heard of and have actual experiences with these specific diseases. ACHSE wants to call attention to these problems.

In contrast to the situation in France, for example, rare diseases do not have a lobby in Germany. That is why the ACHSE is keen to push concrete solutions and to allow not only patients but also healthcare systems and authorities to have access to the various groups’ know-how.

More than 120 self-help groups are united in the ACHSE e.V..

ACHSE considers itself as a network helping people to help themselves.

The objectives of ACHSE are:

To increase the general knowledge on rare diseases; to support the foundation and formation of supraregional self-help organizations for people with rare diseases; to link people with rare diseases and their self-help organizations; to politically represent the interests of people with rare diseases; to improve the information (knowledge?) of physicians and other therapists on the symptoms, diagnosis, course and therapy of rare diseases and to improve the communication with specialists; to enhance the co-operation of physicians, pharmaceutical industry and the self-help groups on the basis of transparency and independence; to push research in the field of rare diseases, their medicines (so-called “orphan drugs”) and further therapeutic options.

More information on www.achse-online.de

The Council of the European Union decided on action leagues which were to be introduced till 2013 in the member states.

In a combined effort, ACHSE, the Federal Ministry of Education and Research and the Federal Ministry of Health develop suitable concepts. This gives reason to hope that in the foreseeable future there will be important progresses regarding the diagnosis, therapy, research, etc..

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