SE-ATLAS

The goal of SE-ATLAS is to provide an overview of care facilities and patient organizations for people with rare diseases in Germany.

The SE-ATLAS was initially funded by the German Federal Ministry of Health (BMG) and was implemented as part of the National Action Plan for People with Rare Diseases (NAMSE).

In addition to the Medical Informatics Group of the University Hospital Frankfurt as consortium leader, the Frankfurt Reference Center for Rare Diseases (FRZSE), the Center for Rare Diseases Tübingen, Orphanet Germany, and the Alliance of Chronic Rare Diseases (ACHSE e.V.) experts with different perspectives from the field of rare diseases participated in the project. SE-ATLAS is currently further maintained and operated by the Medical Informatics Group

The SE-ATLAS is aimed at people affected by rare diseases, their relatives, physicians, non-medical personnel, as well as generally interested parties.

The information in the SE-ATLAS is checked at regular intervals and updated if necessary. Newly entered information is checked by the se-atlas editorial team and, if necessary, validated with the help of additional data sources. If the information is complete and correct, the entry is activated.

The data in the SE-ATLAS builds on various existing data sources.

• Facilities recommended by patient organizations
• Collections of Orphanet Germany and ACHSE e.V.
• Facilities certified by professional associations
• Certified members of the European Reference Networks (ERN)

You do not need to be registered with SE-ATLAS to search for care facilities and self-help organizations - you can use the search function to its full extent without registering.

Only with registration is it possible to enter facilities and patient organizations.

Unfortunately, it happens in some cases that the confirmation email ends up in the spam folder. Please have a look there. If there is no email from SE-ATLAS there either, please contact the se-atlas administrator.

Request a link on this page which will allow you to reset password. To do this, please enter the email address of your user account. The link will be sent to you by e-mail. If you forget the email address, please contact the SE-ATLAS editorial team.

Using the search field you have the possibility to search with the name of a rare disease. Diseases will be suggested to you automatically. It is also possible to search for a rare disease with the ICD-10 GM code. In addition, to the right of the disease is displayed how many institutions and self-help organizations for the searched disease are recorded in the SE-ATLAS.

To date, there are no complete lists of all care facilities in the field of rare diseases. Therefore, it is quite possible that a facility you know of is still missing here. Please feel free to inform us of any care facilities you know of. We are grateful for any information. Contact us using the contact form.

Despite conscientious input and external verification, it is possible that data is incorrect or out of date, so we appreciate your feedback. Simply contact us with the appropriate note using the contact form.

If you notice that a care facility is found under a disease that is not correct or, conversely, is not found, simply contact us with the appropriate note using the contact form. You are also welcome to do this anonymously.

If you know of an appropriate care facility, you are very welcome to send us the information via the contact form (if possible with additional information, such as website, contact person, diseases treated). If you yourself work in such a facility, you can register in the SE-ATLAS, enter the data and request an activation by the editors.

After you have entered a care facility (not superordinate) or self-help organization, you can assign diseases or disease groups to it. The assignment should be as specific as possible, since your entry will be displayed among the assigned diseases for the users of the SE-ATLAS.

The diseases that can be assigned to an entry in the SE-ATLAS are based on the public Orphanet classification. All diseases classified there can be assigned to an entry in the se-atlas.

No, in order to ensure a clear assignment of a care facility to a contact person, this is not possible. You can, of course, share the access data (in confidence) with other persons. However, please make sure that you are not logged in at the same time, otherwise synchronization errors may occur.

No, because a good overview and medical knowledge about the treated diseases is necessary, this is not possible. You are welcome to report care facilities known to you by sending us the information via the cotact form (if possible with additional information, such as website, contact person, diseases treated).

Unfortunately, small errors can occur during programming. If something doesn't work or look as it should when using SE-ATLAS, you are very welcome to report it to us using the contact form. We will do our best to fix potential bugs as soon as possible.

The search results are displayed either in an interactive map view or in the form of a detailed listing.

The search results are sorted alphabetically by the name of the city in which the care facility or self-help organization is located.

In this case, centers for rare diseases (ZSE) are displayed. These are special facilities for rare diseases, which combine various care facilities interdisciplinary under one roof. The facilities usually offer telephone consultation hours with so-called pilots, who have a good overview of the diseases treated and the corresponding contact persons. For this reason, it is recommended to contact them in the first place.