Reference Material
 

The KSN Reference Library has four items in it:

Journal Articles

Our Journal Articles page lists over 100 articles about Kabuki syndrome from academic journals all over the world. Some of the article titles are linked to online abstracts at PubMed. You may click on the article title to see the abstract (and then use your browser's BACK button to return to KSN). If you would like to read the entire article you must go to your local hospital's library or similar institution. Although most hospital libraries do not have all the journals, they should be able to obtain a photocopied version for you, or direct you to another library that has what you are looking for. The libraries of universities with Medical Schools are also a good resource.

Check back from time to time as this listing of articles will be updated as new ones are written. If you know of any articles about Kabuki syndrome that are not included in the list, please use the online form at the bottom of the list to send us the reference.

Go to the List of Journal Articles

We have also prepared a short list of foreign language articles.


Dictionary of Medical Terms

Quite often the language used in scholarly journal articles can be highly scientific and difficult for the lay person to decipher. We have created the Dictionary of Medical Terms to assist in the understanding of the articles. It is very much a 'work in progress'; if you have any suggested additions or revisions, please use the online form at the bottom of the dictionary page to send us your suggestion.

Go to the Dictionary of Medical Terms

If you wish, you may download the Dictionary of Medical Terms. To do this, go to the no-frames version of the dictionary and choose File | Save As... in your Web browser. By saving the file on your computer (you may name it whatever you wish), you will be able to access the Dictionary of Medical Terms without having to be connected to the Internet. Once the file is saved locally, you may open it with your Web browser (File | Open) by browsing to the directory where you initially saved the Dictionary, or if you have an advanced wordprocessor, you can open the Dictionary in it.


Files of Additional Information

With passage of time, Kabuki Syndrome Network has accumulated a number of articles from various authors that further shed light on this varied syndrome. Many of the articles have been published in past editions of KSN's newsletter, the Kabuki Journal. Please feel free to download articles to your computer and read at leisure. To do so, follow directions above.

Go to the Files


Downloadable Brochure

Most of the specialists and therapists our children encounter will not be familiar with Kabuki Syndrome. It has therefore become increasingly obvious that parents need to be equipped with as much knowledge of the syndrome as possible. This downloadable brochure, designed by Margot Schmiedge and Heather Johnson, can be a useful tool in working with the professionals that our children see. It is also available in hard copy to all KSN members and professionals requesting it.

Go to Downloadable Brochure

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