The Klippel-Trenaunay Support Group (K-T Support) was founded in 1986. We welcome patients and their families as members and provide information about the group and about Klippel-Trenaunay (K-T, KT, KTS) Syndrome, a combined vascular malformation.
The syndrome is characterized by a localized or diffuse capillary malformation (portwine stain) that overlies a venous malformation and/or lymphatic malformation with associated soft tissue and bone hypertrophy (excessive growth). The portwine stain is typically substantial, varicose veins are often quite numerous, and bone and soft tissue hypertrophy is variable. The affected limb is either larger or smaller than the unaffected limb. Hypertrophy occurs most commonly in the lower limbs, but may affect the arms, the face, the head or internal organs. Additionally, a wide range of other skeletal and skin abnormalities sometimes coexists.
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.
Mail donations to :
1471 Greystone Lane
Milford, OH 45150
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.).
K-T Support now offers an email discussion group through Mailman software. The email group allows you to correspond using one email address for the entire email subscription list.
If you want to discuss K-T issues with others, the email discussion group offers the best ongoing opportunity. Emails average 7 per day. These emails cover topics relevant to KT members.
After signing up, you can manage your subscription using the email address you used to register and your password. This software is separate from our website, so your website registration and password will not access the discussion groups. The discussion groups are an added service, and are not required for membership.
For information about the family email discussion group visit our Discussion Group General Information.
If you are not a member of the K-T Support Group, register by completing our online application:
New registrations are verified weekly; instant registration is not available.
If you have a question or comment that requires a quicker response please email firstname.lastname@example.org and allow 24-48 hrs for a reply or call 513-722-7724.
Network with us on Facebook! To participate at our Facebook site, KT.org, send a request to email@example.com.
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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.