Plain Language
Information about the SE-ATLAS project
There are many people with rare diseases.
This means:
There are not many people with this disease.
Rare diseases often last a long time.
One often does not know how to help the sick people.
Often the doctors do not know the name for the disease either.
The SE-ATLAS project reports about it.
se means: rare diseases
atlas means:
On the internet there is a map of Germany.
On the map you can click on places.
In the places there is help for people with rare diseases.
This help is called centre for rare diseases.
You can find a centre on the map on the internet.
You can also find a care centre on a list on the internet.
The maps are interactive.
This means
You can also enter something on the map or list yourself.
Everyone can participate.
For example:
- People with a rare disease
- Relatives
- Doctors
- Nurses
- Employees
- All those who know something about rare diseases
The SE-ATLAS has been available since February 2015.
Information on rare diseases has been collected before.
The information has been collected.
You can now find it in the SE-ATLAS.
There is always new information available.
All information is published on the website of SE-ATLAS.
The SE-ATLAS is getting bigger and bigger.
There should be such maps also in other countries.
The project partners work together.
The partners are:
- Medical Informatics Group (MIG), Universitätsklinikum Frankfurt
- Frankfurter Referenzzentrum für Seltene Erkrankungen (FRZSE), Universitätsklinikum Frankfurt
- Behandlungs- und Forschungszentrum für Seltene Erkrankungen Tübingen (ZSE Tübingen), Universitätsklinikum Tübingen
- ORPHANET Deutschland, Institut für Humangenetik, Medizinische Hochschule Hannover
- Allianz Chronischer Erkrankungen (ACHSE e.V.)
Imprint
The project SE-ATLAS
has written the text.
That means in difficult language:
mapping of facilities
for people with serious diseases.
This is the internet site:
www.se-atlas.de
Bärbel Brüning
from the Institute for Easy Language
Lebenshilfe Schleswig-Holstein
has written the text in easy language (german version).
This is the Internet site:
www.lebenshilfe-sh.de
The logo is designed from Inclusion Europe.
This is the internet address:
www.inclusion-eurpoe.org/etr
There is a contact form.
You can write in it.
You can ask questions.
You can also write ideas.
You can also write a mail:
info@se-atlas.deYou can talk to this person:
Mr. Storf is available for questions about SE-ATLAS.
Mr. Storf is in charge of the project.
His address:
Dr. Holger Storf
Institute of Medical Informatics (IMI)
University Hospital Frankfurt
House 33C 2OG
Theodor-Stern-Kai 7
60590 Frankfurt am Main
storf@med.uni-frankfurt.de
You can ask here:
Allianz Chronischer Seltener Erkrankungen (ACHSE) e.V.
You can also ask here:
AXIS
telephone number: 030 3300708 22
Monday and Wednesday
from 10. 00 a.m. to 1.00 p.m..
And on Thursdays from 3.00 p.m. to 5.00 p.m..
You can also send an e-mail:
beratung@achse-online.de
Questions about the SE-ATLAS project.
The project shows centres for people with rare diseases. You can find it on a map on the Internet. And on a list.
Se-atlas is only available on the Internet. The address on the Internet is: www.se-atlas.de
There is a plan for people with rare diseases.
It is called in difficult language:
National Action Plan for people with rare diseases.
There are many partners.
Some have difficult names:
- Institut für Medizininformatik am Universitätsklinikum Frankfurt
- Frankfurter Referenzzentrum für Seltene Erkrankungen (FRZSE)
- Zentrum für Seltene Erkrankungen Tübingen
- Orphanet Deutschland
- Allianz Chronischer Seltener Erkrankungen (Achse e.V.)
For people with rare diseases
For their families
For doctors
For employees in facilities
For employees in companies
For all those who want information on rare diseases.
For those who can provide information on rare diseases.
No.
If you are looking for information, you do not need to register.
If you want to share information about centres
Then you need to register.
A centre is for example a hospital.
Here you can get a new password: https://www.se-atlas.de/me/lostpassword/
You must then also enter the e-mail address.
Then you will get the address for an internet site.
Click on the page.
Then you will receive a new password.
There is a search field on the website.
It looks that way:
You can write an disease in the field.
The centres are shown.
Support groups are also shown.
The SE-ATLAS lists are not complete.
Some centres are not registered.
You can report this.
You can do this with the contact form.
You can report an error.
This can be done via the contact form.
SE-ATLAS thinks it is good if you report errors.
The employees of SE-ATLAS check all information.
The employees of SE-ATLAS also ask questions.
Errors are changed.
If information is complete, it will be activated.
Anyone can report information using the contact form.
If you work in a centre:
You can register.
Then you can post information yourself.
Se-atlas activates the information.
Se-atlas collects information from others, for example from support groups.
Se-atlas put the informations together.
So the information becomes more and more.