HELP FOR PATIENTS

Self-help - 
 strong together

For rare disease families, self-help groups are often important points of contact that provide information, network knowledge and help break through isolation.

Patient organisations often provide decisive research impulses. This is reflected not least in the mandatory involvement of patient representatives in the European Reference Networks (ERNs). 

For around ten years, scientific, medical and health policy interest in rare diseases have been on the rise. This success is primarily due to the tireless commitment of patient organisations and the physicians and scientists who support them.
Alliance of Chronic Rare Diseases (ACHSE e.V.)
Eva Luise Köhler lächelt gemeinsam mit Josephine Schulz und Michael Wächter bei der Eröffnung einer Fotoausstellung in die Kamera.
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 groups
CONTACT 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. 
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.
 
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