The Klippel-Trenaunay Support Group was founded in 1986.   We welcome patients and their families as members and provide information about the group and about Klippel-Trenaunay Syndrome.  We provide families, adults with K-T, and professionals with links to information and opportunities to learn from each other.  K-T Support Group activities include bi-annual meetings of patients and their families (with medical advisors available to those who wish it) and maintaining a confidential group roster (distributed only to group members). A periodic newsletter of shared experiences is distributed. Campaigns to seek out new members and to make the medical community aware of the group are undertaken, as are distribution of literature and information to members and the medical community. Pertinent medical literature related to K-T is shared. Phone support among members is available. Membership privacy is respected.

The K-T Support Group encourages contributions from members and others interested in Klippel-Trenaunay Syndrome. All activities are funded by and dependent upon these contributions which are the Group’s sole means of financial support. Donations are greatly appreciated and put to maximum use in furthering support and informational services. No one is refused admission to the Group for financial reasons, however.

Affiliations and Tax Status

The K-T Support Group is an Associate member of the National Organization of Rare Disorders (NORD). The   K-T Support Group has received notification from the Internal Revenue Service of official status as a non-profit, tax-exempt organization. This means that any gifts or contributions made from the date of incorporation (August 31,1998) will qualify as contributions to a tax exempt organization (i.e a Section 501 (c) (3) organization) for federal income tax purposes.).

Networking

As a service to members, we maintain an email discussion group. To request information about joining either the discussion group or the K-T Support Group, please click here to contact the Information Coordinator.

If you are not a member of the K-T Support Group, register by completing our online application:

Register

Network with us on Facebook!  To participate at our Facebook site, KT.org, send a request to support@k-t.org.

Share on Facebook at

Cases of K-T vary widely from person to person and each person must be treated on an individual basis.  Any opinions/statements expressed on this site are for general information only. The opinions/statements made are not the opinions/statements of the K-T Support Group. The K-T Support Group does not recommend treatment for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.