Seltene Erkrankungen - Hilfe für Betroffene
HELP FOR PATIENTS
Self-help -
strong together
Alliance of Chronic Rare Diseases (ACHSE e.V.)

Eva Luise Köhler has been patron of the Alliance of Chronic Rare Diseases (ACHSE e.V.) since 2005. As an umbrella organisation, ACHSE represents the interests of patients and their families in politics. ACHSE also provides concrete assistance in the search for reliable information and contacts to treatment centers and self-help groups.
To the ACHSE consultation for affected persons
Are you a physician or therapist looking for experts or specific research activities in the field of rare diseases?
ACHSE-Guide Dr. Christine Mundlos can help you with a broad network of specialists.
To the ACHSE-Guide for specialist groupsCONTACT POINTS
Centers for Rare Diseases
People with rare or still unexplained diagnoses are dependent on up-to-date knowledge about their often very complex clinical pictures.
For this reason, virtual centers for rare diseases (ZSE) have been established at university hospitals since 2009, in which patient guides coordinate the multiprofessional cooperation of different departments. This gives patients access to modern diagnostic procedures, qualified physicians and specialized therapists.
Referring physicians or patients should contact directly the controllers of a ZSE close to their home to discuss the further procedure. If they do not have sufficient expertise on the respective disease, they will help you to find a suitable center.
DID YOU KNOW THAT
...self-help groups are often important points of contact for families affected by rare diseases, providing information, networking knowledge and helping to break through isolation.
Unsere Netzwerkübersicht basiert auf Google Maps!
Um die Karte anzuzeigen müssen alle Cookies akzeptiert! werden
Cookie Einstellungen anzeigenUm die Karte anzuzeigen müssen alle Cookies akzeptiert! werden
Aachen
Zentrum für Seltene Erkrankungen Aachen (ZSEA)
Augsburg
Augsburger Zentrum für Seltene Erkrankungen (AZeSE)
Berlin
Berliner Centrum für Seltene Erkrankungen (BCSE)
Bochum
Centrum für Seltene Erkrankungen Ruhr (CeSER)
Bonn
Zentrum für Seltene Erkrankungen Bonn (ZSEB)
Cottbus
Zentrum für Seltene und Ungeklärte Erkrankungen (ZSE)
Dresden
UniversitätsCentrum für Seltene Erkrankungen (USD) Dresden
Düsseldorf
Zentrum für Seltene Erkrankungen am Universitätsklinikum Düsseldorf (ZSE UKD)
Erlangen
Zentrum für Seltene Erkrankungen Erlangen (ZSEER)
Essen
Zentrum für Seltene Erkrankungen Essen (EZSE)
Frankfurt/Main
Zentrum für Seltene Erkrankungen (ZSE) am Clementine Kinderhospital
Frankfurt/Main
Frankfurter Referenzzentrum für Seltene Erkrankungen (FRZSE)
Freiburg
Freiburg Zentrum für Seltene Erkrankungen (FZSE)
Göttingen
Zentrum für Seltene Erkrankungen Göttingen (ZSEG)
Hamburg
Martin Zeitz Centrum für Seltene Erkrankungen (ZSE) Hamburg
Hannover
Zentrum für Seltene Erkrankungen (ZSE) Hannover
Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg
Homburg
Zentrum für Seltene Erkrankungen (ZSE) am Universitätsklinikum des Saarlandes
Jena
Zentrum für Seltene Erkrankungen (ZSE) Jena
Köln
Zentrum für Seltene Erkrankungen (ZSE) Köln
Leipzig
Universitäres Zentrum für Seltene Erkrankungen (ZSE) Leipzig
Lübeck
Zentrum für Seltene Erkrankungen (ZSE) Lübeck
Mainz
Zentrum für Seltene Erkrankungen des Nervensystems (ZSEN) Mainz
Magdeburg
Mitteldeutsches Kompetenznetz Seltene Erkrankungen (MKSE)
Mannheim
Zentrum für Seltene Erkrankungen (ZSE) Mannheim
Marburg
Zentrum für unerkannte und seltene Krankheiten (ZUSE) Marburg
München
Münchener Zentrum für seltene Erkrankungen (MZSE)
Münster
Centrum für Seltene Erkrankungen (ZSE) Münster
Regensburg
Zentrum für Seltene Erkrankungen (ZSE) Regensburg
Tübingen
Zentrum für Seltene Erkrankungen (ZSE) Tübingen
Ulm
Zentrum für Seltene Erkrankungen (ZSE) Ulm
Wiesbaden
Zentrum für Seltene Erkrankungen (ZSE) Wiesbaden
Würzburg
Zentrum für Seltene Erkrankungen (ZESE) - Referenzzentrum Nordbayern
Quality Assurance in the Centers for Rare Diseases
For the recognition of a ZSE as a reference center (type A center), the National Action Plan for Rare Diseases has defined certain criteria. Among other things, a ZSE must demonstrate the equal importance of research and care activities and the implementation of interdisciplinary case conferences.
As a member of the NAMSE network, the Eva Luise and Horst Köhler Foundation as advocated an audit procedure for the quality assurance of this extremely important care structure. In the meantime, an independent certification body has begun to audit the centers and certify their quality. The first centers have already been successfully certified.
Case study: Cancer centers
With their "OnkoZert" certification procedure, the cancer centers have demonstrated how an orderly certification procedure can promote cooperation across locations and save seriously ill patients waiting times and unnecessary wandering in the healthcare system.
This is a win-win situation from which the healthcare system also benefits: high costs resulting from repeated diagnostics, unnecessary interventions and consequential damage are eliminated.
The sharp increase in survival rates for many cancers is not only due to innovative medicines, but also to personnel-intensive care provided by interdisciplinary teams.