Frequently asked questions - FAQs
The goal of se-atlas is to provide an innovative overview about the care facilities and support group organisations in Germany specialised in people with rare diseases.Ziel von se-atlas ist es, einen innovativen Überblick über Versorgungseinrichtungen und Selbsthilfeorganisationen für Menschen mit seltenen Erkrankungen in Deutschland zu geben.
The se-atlas project is supported by the Federal Ministry of Health (http://www.bmg.bund.de/) and is being realised in frame the of the National Action Plan for people with rare diseases (http://www.namse.de/images/stories/Dokumente/nationaler_aktionsplan.pdf).
Alongside with the Medical Informatics Group of the University Hospital Frankfurt as the consortium leader, several other experts from the field of rare diseases contribute to the se-atlas project. These include the Frankfurt Reference Center for Rare Diseases (FRZSE), the Centre for Rare Diseases (ZSE) Tübingen, Orphanet Germany, as well as the German National Alliance of Chronic Rare Diseases (ACHSE e.V.).
se-atlas is addressed to patients suffering from rare diseases, their relatives, medical doctors, non-medical personnel and generally to all interested persons.
To search for care facilities and support group organisations you do not nicht need to be registered at se-atlas.
You need to be registered and logged in at se-atlas to create new entries for care facilities or support groups.
Via the search field you have the opportunity to directly search by name of a rare disease. Additionally it is also possible to search for a rare disease by ICD-10 GM Code. Diseases will be automatically proposed to you. The search results will be displayed as a list. To the right of each listed disease you will also find displayed the number of facilities and support group organisations that are assigned to this disease in se-atlas.
You can adjust the search for any city or region. For this purpose you need to click on “My location” above the map or list view and type in an address or city name. In the map view your location will then be displayed as a red marker. In the list view the search results will be displayed including their distance to the specified location.
The search results can be displayed in the form of an interactive map as well as in the form of a detailed listing.
The search results are sorted alphabetically by name of the city in which the care facility or support group organisation is located.
Why is a care facility known to me missing in se-atlas, although it also focuses on certain rare diseases?
So far there do not exist complete data sets that list all care facilities focusing on rare diseases. Therefore it is likely that a facility known to you is still missing in se-atlas. You are welcome to name the missing care facility to us. We are grateful for any reference. Please contact us via the contact form.
Despite conscientious entering and review of the data, details might be incorrect or no longer current. Thus, we are grateful for your feedback. Please contact us, easy and simple, via the contact form.
In case you find a care facility assigned to a wrong disease or -the other way around- not assigned to a treated disease, please contact us via the contact form. If you prefer, you can also remain anonymous.
Entered data is verified by the se-atlas editorial team and validated by means of queries if necessary. An entry will not be activated until the information is complete and correct.
In case you know a care facility which is specialised in rare diseases but is not listed in se-atlas, please provide us with the required information via the contact form (if possible including additional information regarding website, contact person and treated diseases). If you work in such a facility yourself, you may register in se-atlas, create a new entry and request activation via the editorial office.
The data in se-atlas builds upon several already available data sources that are brought together in se-atlas.
- Facilities recommended by support group organisations
- Collections by Orphanet Deutschland and ACHSE e.V.
- Facilities certified by expert associations
After you have entered the information for a care facility (not a parent facility) or a support group organisation you can assign different diseases or groups of diseases to your entry. Thereby the assignment of diseases should be as specific as possible, since your entry will be displayed to the user on the basis of the assigned diseases.
Diseases that can be assigned in se-atlas are based on the public Orphanet-classification. Only diseases classified in Orphanet can be assigned to an entry in se-atlas.
This may be due to the fact that the care facility has not yet been synchronised with se-atlas or that it does not fulfil the criteria defined for se-atlas.
No. This is not possible to ensure an unambiguous assignment between a care facility and its contact person. Nevertheless, you can trustfully share your login data with another person. Please note that you should not be logged in simultaneously, as this might lead to system failures.
In some cases the confirmation email is unfortunately filtered out as spam. Therefore, please check your spam folder. If there is also no email from se-atlas, please contact the se-atlas administrator.
No. This is not allowed, since a good understanding and medical knowledge about the treated diseases is necessary to register a new facility. But you are welcome to report an unlisted care facility to us. For this purpose please provide us with the required information via the contact form (if possible including additional information regarding website, contact person and treated diseases).
Unfortunately, small errors can occur during programming. If se-atlas does not look or work as it should, please report that to us via the contact form. We endeavour to debug any potential error as soon as possible.
Under this item core facilities for rare diseases (ZSE) will be displayed. These are specialised institutions for rare diseases that interdisciplinarily combine different care facilities in one centre. Usually these ZSE’s offer telephone consultation hours with so-called guides that have a good overview of the treated diseases and the appropriate contact persons. For this reason it is recommended to contact these guides in first place.