Kabuki Syndrome Network - Directory of Families

ne of the most important functions of KSN is to bring families together. Because Kabuki syndrome involves so many different symptoms and treatments, members of the network will benefit from a directory that facilitates finding families who have dealt with similar experiences. The KSN Directory was created with this in mind. The directory is truly international with nearly 100 members from 14 countries worldwide. To be included in the Family Directory you must be a member of KSN. We would like to make the distinction, however, that by becoming a KSN member, you are not automatically included in the Family Directory. If it's your wish to be included in the Family Directory, you will need to apply either online or mail the printable version. To protect the privacy of members, the KSN Directory is not posted here on the World Wide Web. Instead, there are two example entries for you to look at to help you decide if you would like to be included in the Directory.

There are two sample entries which show what information the Directory inlcudes and why.

Find out about how to register and be included in the Directory.

The KSN Family Directory is being updated and re-distributed on an annual basis. New members receive their copy shortly after registration. It is our hope that closer relationships may develop between families on the directory who may be more readily accessible to each other or whose children may have common symptoms or treatments. In addition to the Directory, KSN offers the Email Discussion Group for online discussion of issues related to Kabuki syndrome.

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