In 2004-2005 I was full force working for and in support of this pioneering, member-driven KT Support organization, It became my fulltime focus. I had the time for sure. I was basically bed-ridden by doctor’s orders and unemployed via permanent disability.
Willi-Anton
The Mayo Clinic, Rochester, MN, in particular is due a ton of gratitude for sponsoring its work and listening to that first mom that walked the halls of the Gonda Vascular Clinic hoping one of their doctors would agree to treat her daughter and then to support a world thirsty for knowledge and research. These mutual efforts created the first US-based full force Klippel-Trenaunay reference and referral center.
Today, as I work on an international basis, it is profoundly satisfying to hear of other Countries and their respective member-driven Support Groups reaching out within their counties.
Klippel Trenaunay Support Group [k-t.org]
… the first-in-the-world Klippel-Trenaunay Syndrome Support Group
… the pioneers of KT Suport Groups
- Organization’s Website and Blog Group [www]
- Facebook Discussion Group [www]
- Email Discussion Group
- Option 1: Go directly to the email group’s admin webpage and fill in the “Request to Join” information. [www]
- Option 2: Send an email message to listserv-request@k-t.org to join.
- Note: This group uses a blast email service called “Listserv”. It is run by administrators for the organization. They are [coolmatt@sorrowind.net] and [mellenee.finger@fuse.net]
General Links
- PubMedHealth [www]
- MedlinePlus
- National Institues of Health – Nureo [www]
- National Institutes of Health – Genetics Home Reference [www]
- Patient.co.uk
- International Birth Defects Information System
- Birthmarks.us
- NOVA – National Organization of Vascular Anamolies
Hospitals, Clinics and Institutions of Care
- Cleveland Clinic
- Children’s Hospital Boston
- Cincinnati Children’s Hospital
- University of Maryland Medical Center [www]
- Seattle Children’s [www]
Research & Papers
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