organizations & helpful resources
Vascular Birthmarks Foundation- Hereditary Hemorrhagic Telangiectasia
- Lymphangiomatosis and Gorham’s Disease Alliance
- Klippel Trenaunay Support Group
- National Lymphedema Network
- Sturge Weber Foundation
- PTEN Hamartoma Tumor Syndrome Foundation
- Cloves Syndrome
- National Organization for Rare Diseases
- Medline Plus
- Genetics Home Reference