Achse Online
ACHSE e.V. Job Portal:
Here you will find job offers at the umbrella organization for people with chronic rare diseases.
Über Allianz Chronischer Seltener Erkrankungen - ACHSE e.V.
editThe Allianz Chronischer Seltener Erkrankungen – ACHSE e.V. is the umbrella organization for people with chronic rare diseases and their relatives in Germany. As a nationwide patient organization, ACHSE represents the interests of over 130 self-help organizations and an estimated 4 million people affected by one of the approximately 8,000 known rare diseases.
ACHSE's main mission is to sustainably improve the living situation of people with rare diseases and their families. This is done by strengthening self-help, representing the interests of those affected to politics, healthcare and the public, improving the flow of information and promoting research.
ACHSE's core tasks include:
- Interessenvertretung: ACHSE actively advocates for the interests of people with rare diseases by issuing statements on draft laws, advising political decision-makers and carrying out campaigns to raise public awareness.
- Stärkung der Selbsthilfe: ACHSE supports self-help organizations by providing resources, training and networking opportunities. The ACHSE Selbsthilfe Akademie and the Selbsthilfe Wiki are important instruments for strengthening the skills of self-help actors.
- Unterstützung von Betroffenen und Angehörigen: ACHSE offers cross-disease advice for those affected and their families. The ACHSE-Lotsin also refers doctors and therapists seeking advice to specialists and competence centers.
- Öffentlichkeitsarbeit: ACHSE creates public awareness for rare diseases through the organization of the Tag der Seltenen Erkrankungen, art exhibitions such as "Selten allein" and photo exhibitions such as "WAISEN DER MEDIZIN".
- Verbesserung der Informationen: ACHSE is constantly working to improve and make information about rare diseases more accessible. This includes the creation of brief information for patients in collaboration with the Ärztlichen Zentrum für Qualität in der Medizin (ÄZQ) and the development of the se-Atlas, a cartographic representation of care facilities for rare diseases.
- Vernetzung von Ärzten und Therapeuten: ACHSE promotes networking between doctors and therapists in order to improve the care of people with rare diseases. The ACHSE-Lotsin plays a central role here.
- Förderung der Forschung: ACHSE is driving research in the field of rare diseases, including through the awarding of the Eva Luise Köhler Forschungspreises and the development of funding structures.
ACHSE attaches great importance to transparency and sustainability. The organization regularly publishes annual reports and financial data and is committed to the principles of the Bundesarbeitsgemeinschaft Selbsthilfe (BAG Selbsthilfe).
By pooling resources and know-how, ACHSE gives the "rare" a voice and helps to sustainably improve their quality of life.
Quellen:
edit- https://www.achse-online.de/de
- https://www.achse-online.de/de/die_achse
- https://www.achse-online.de/de/was_tut_ACHSE
- https://www.achse-online.de/de/was_tut_ACHSE/unterstuetzen.php
- https://www.achse-online.de/de/Aktuelles/index.php
- https://www.achse-online.de/de/was_tut_ACHSE/informationen_verbessern/kurizinformationen_aezq.php
- https://www.achse-online.de/de/Informationen/publikationen/achse_aktuell
- https://www.achse-online.de/de/Mitgliedsvereine/Infokoefferchen.php
- https://www.achse-online.de/de/die_achse/mitgliederversammlung.php
- https://www.achse-online.de/de/die_achse/satzung.php
