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Add knowledge
Add knowledge

We hope that you found the information you were looking for and that we were able to help you with our KMSK knowledge platform.

As parents and families and families of children and adolescents with a rare disease, you are the real are the true experts on your child's disease and therefore have a wealth of knowledge about a wealth of knowledge about support services and services for children we would like to ask you to send us your suggestions for the update of the Platform using the form below.


  • Do you know of additional contact points and organizations that we should list?
  • Would you like to share another valuable tip that you feel is missing from this page?
  • Is an information or link we list out of date?
  • etc.

We also ask Institutions, specialists, contact points, etc. to request updates if information is no longer if information is no longer up to date or is not yet listed at all not yet listed.


We are very pleased parents and professionals to contribute to the dynamic development of the platform Further development of the platform. We will gladly review each Review each update request to decide if it meets our criteria Criteria.


Thank you for your Support!


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1. Step

Select the suitable form

2. Step

To which of the topics covered does your suggestion for adjustment, addition, or deletion, if any, apply?

What do you want to apply for?

3. Step

Is this a general reference or a specific point of contact/organization to be listed?

4. Step

Should you wish to list a completely new piece of information/reference, please describe and justify your suggestion in as much detail as possible and add links (if available) that lead to this information. If any information/link is outdated/incorrect, please copy and paste it here, noting your request for adjustment. And also, if there is a proposal to delete a particular piece of information, we ask that you paste it here and justify the request.

5. Step

We thank you for your support in keeping the information platform up to date and complete and for sharing your valuable knowledge with other families as well!

We thank you for your support in keeping the information platform up to date and complete and for sharing your valuable knowledge with affected families!

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