SE-ATLAS

Mapping of Health Care Providers
for People with Rare Diseases

Description of patient organisation

Education as a mission: The non-profit patient organisation Alpha1 Deutschland e.V. campaigns for better education about the rare metabolic disease - as well as for early diagnosis and targeted therapy. Experts estimate that about 20,000 people in Germany suffer from Alpha-1-Antitrypsin Deficiency, or "Alpha-1" for short. Worldwide, it is one of the most common hereditary diseases. Only about one in ten of those affected has been discovered or diagnosed so far and thus treated properly. That is a high number of unreported cases. And: On average, it takes 5 - 7 years until an AAT deficiency is diagnosed.

The aim of Alpha1 Deutschland e.V. is to raise awareness of this disease among doctors and researchers as well as politicians and the general public. Therefore, the association organises regular information days for adults and children, to which specific speakers are invited who deal intensively with AAT deficiency. Twice a year, the association informs its members through the Alpha1 Journal. Here, doctors, self-help groups and members have their say. The association supports regional self-help groups and gives group leaders the opportunity for further training. The list of self-help groups can be found on the website of Alpha1 Deutschland e.V. Affected people and their relatives can contact the association by telephone for questions about everyday life with AAT deficiency. The association will also be happy to put you in touch with doctors or give you the names of clinics in your area.

In the case of the hereditary metabolic disease alpha-1-antitrypsin deficiency (Alpha-1 for short), those affected lack a protective protein of the lungs, the so-called alpha-1-antitrypsin. The lack of protection causes the lung tissue to deteriorate over the years. The metabolic disease can become noticeable mainly through shortness of breath (at first only during exertion - later also at rest), coughing (often initially in the early hours of the morning) and sputum. Increased liver values can also be a sign of alpha-1-antitrypsin deficiency. People affected often first notice these symptoms between the ages of 35 and 45. Since the main symptoms of alpha-1-antitrypsin deficiency also apply to other diseases such as COPD or asthma, the disease is not recognised for a long time in many of those affected. Yet the disease can be detected or ruled out using simple test methods. As a genetic defect, the disease cannot be cured, but there are various treatment options available to slow down its course. In addition to bronchodilators, substitution therapy can also help. In this therapy, the patient receives the missing alpha-1-antitrypsin by infusion.

Care provisions

This support group organisation offers the following
  • Participation in registries
  • Regular meetings
  • Regional associations / regional representatives
  • Newsletter / Association journal
Special offers
Once a year, an information day is held with many interesting lectures on the topic of alpha-1 antitrypsin deficiency. Every two years, the association also organises a special children's day (for affected children and their parents). You can find more information at www.alpha1-deutschland.org.

Contact

0800 5894662
info@alpha1-deutschland.org
Website

http://www.alpha1-deutschland.org/

Address

Alte Landstraße 3
64579 Gernsheim

Calculate route

Preview of the represented diseases 1

8.49087153552590849.758065650000006Alpha1 Germany e.V.
Last updated: 08.12.2022