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The
Klippel-Trenaunay Support Group was founded in 1986. The K-T Support
Group welcomes patients and their families as members. This World
Wide Web site for the K-T Support Group has been established to
provide information about the group and about Klippel-Trenaunay
Syndrome, and to provide families, adults with K-T, and professionals
with links to the group. For more information, please visit our
web site at www.k-t.org |
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Toujours Belle/Still Beautiful is an inspirational blog from KT patient Arianna Faro. Formerly the author of KT Fabulous, Arianna has taken her blogging skills to this new site. "While having a disability does provide me with unique obstacles, it also brings me covert blessings although sometimes it is MUCH harder to see them than others." - Arianna Faro
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KT Buddy is an online community whose mission is to bring together KT Syndrome patients, their families, their friends and supporters by:
* Sharing KT articles, news, stories, and photos
* Facilitating interaction between KT patients, their families, and their friends
* Providing support and counseling to KT Syndrome patients and their families
* Building awareness about KT throughout the world
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NOVA (National Organization of
Vascular Anomalies) is a non-profit
organization dedicated to providing education and advocacy to patients, families
and physicians in the management of hemangioma and vascular malformation. NOVA provides a wide variety of services including educational materials,
educational family conferences, health insurance information, a newsletter
and a web site.
The organization works to get patients to physicians experienced in the diagnosis
and treatment of vascular anomalies. NOVA is able to coordinate
with other agencies to provide free transportation to treating facilities.
Visit: www.novanews.org/ |
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The
Sturge-Weber Syndrome Community (SWSC) is a support-based group for families and
individuals affected by Sturge-Weber syndrome(SWS.) The Community was established
by parents of children with SWS in an effort to provide support, information,
and public education relating to the disease. Membership to the SWSC is free,
and includes the SWC Talk Community online support group. For more information
contact the SWSC at:
swsc@swscommunity.org. You can also visit their site at:
http://swscommunity.org/
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The
mission of the
Sturge-Weber Foundation
is to improve the quality of life
for individuals with SWS and their families. The Foundation acts as a
clearinghouse of information, provides emotional support and facilitates
research on SWS, KT and PWS.
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Born
with Klippel-Trenaunay Syndrome (KTS), Kathryn Tremonto, author and owner of Tulip
Ink, understands how facing adversity can strain one's resilience on physical,
emotional, and spiritual levels. Through her writing, which is based on personal
experience, Kathryn strives to strengthen and preserve the love, trust, and respect
children must have for themselves. |
| Tulip
Ink actively supports advocacy efforts to educate the community about KTS. One
way is by donating .25 cents for every book sold to the KT Foundation. When placing an
order, mention you found Tulip Ink while visiting the KT Foundation web site,
and receive free shipping on your order.
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What is KTS?|
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Form
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All Rights Reserved.
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