Resources- Specific Diagnosis Card Catalog- Klippel-Trenaunay Syndrome
Who to Contact
Klippel-Trenaunay Support Group (K-T Support Group)
5404 Dundee Road
Edina, MN 55424
(612) 925-2596
E-mail: jvessey@uswest.net
Web: www.k-t.org
K-T Support Group provides support for K-T Syndrome patients and their families by sharing experiences and information. It provides a clearinghouse for correspondence between members and maintains a list of current medical literature pertaining to K-T Syndrome available to members and professionals.
It publishes the K-T Newsletter every three or four months, the funding covered by donations. It provides a new parent packet, which includes a roster of families/adults in the group, medical articles if requested, and a questionnaire. They are in the process of establishing a reading list and have some books and videos available for the cost of materials plus shipping and handling. Finally, it sponsors a conference every other year in Rochester, Minnesota.
Where to go to Chat with Others?
K-T Mailing List
To request information about joining either the Mailing List or the K-T Support Group, please e-mail the Information Coordinator at ktnewmembers@yahoo.com. If you are not currently a member of the K-T Support Group, please indicate that you would like information about joining the Group and about joining the Mailing List.
Sturge Weber Support
The SWF assists individuals and professionals seeking information on Sturge-Weber syndrome, Klippel-Trenaunay, and Port Wine Stains. In addition to this forum, the SWF member benefits include: information on the latest research available, access to medical experts, family networking, publications, videos, etc.
Learn More About It
Klippel-Trenaunay-Weber Syndrome
From Online Mendelian Inheritance in Man (OMIM)
Klippel-Trenaunay Syndrome: Its Spectrum and Management
From the Mayo Clinic and Mayo Foundation
Links
Klippel-Trenaunay Syndrome Support Group
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