Related Organizations
National Organization of Vascular Anomalies (NOVA)
The National Organization of Vascular Anomalies is a patient support, advocacy and educational agency for those affected by hemangioma, vascular malformation, rare benign tumors and many related syndromes.
Vascular Birthmarks Foundation
An international charitable organization that networks families affected by a vascular birthmark, tumor or syndrome...
An organization by and for those affected by cavernous angiomas and their loved ones, health professionals, and researchers
The CLOVES Syndrome Foundation is focused on improving the lives of CLOVES patients by funding Overgrowth and Vascular Anomaly research
Hereditary Hemorrhagic Telangiectasia Syndrome (HHT/Osler-Weber-Rendu)
HHT Foundation International is a worldwide, non-profit organization whose purpose is to support patients and families and educate medical professionals with HHT
Klippel-Trenaunay Syndrome Support Group
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 Lymphangiomatosis and Gorham's Disease Alliance
The Lymphangiomatosis & Gorham's Disease Alliance is a 501(c)(3) nonprofit foundation dedicated to patient support, advocacy, and research to find effective treatments and cures for those affected by the rare lymphatic malformations known as lymphangiomatosis and Gorham's disease
M-CM Network (Macrocephaly capillary malformation)
The M-CM Network works to improve the lives of families affected by M-CM
The National Scoliosis Foundation (NSF) is a patient led nonprofit organization dedicated since 1976 to helping children, parents, adults, and health-care providers to understand the complexities of spinal deformities such as scoliosis
The main goals are patient and family support, public education, medical staff education, promotion and funding of research and ultimately the treatment and cure of Proteus Syndrome
Since 1987, The Sturge-Weber Foundation has been providing superior support to all individuals with port wine birthmark related conditions
The Aneurysm and AVM Foundation
Dedicated to bettering the lives, support networks and medical care of those affected by aneurysm and other types of vascular malformation of the brain
Von Hippel Lindau Family Alliance
The Von Hippel Lindau Family Alliance provides information for families and physicians about this disorder, and local self-help support groups for families affected with VHL
General Resources
National Organization of Rare Diseases (NORD)
NORD is 'dedicated to helping the nearly 30 Million Americans with rare diseases..."
Sponsored by the National Library of Medicine, provides access to consumer information including medical encyclopedia, dictionary, news and clinical trials
Genetic Alliance
"Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities...."
PubMed
A service of the US National Library of Medicine - the world's largest searchable database
National Institute of Neurological Disorders and Strokes (NINDS)
NINDS is one of the more than two dozen research institutes that comprise the National Institute for Health. NINDS conducts and supports research on brain and nervous system disorders
How to evaluate health information on the web
This fact sheet from the National Cancer Institute helps consumers ask questions and evaluate health information
This is a tool to help you think critically about the quality of health information (including websites, handouts, booklets, etc.) out there in the world..
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This website is not intended for medical diagnostic use or as a replacement for professional medical consultation. No information or images on this site may be used or reproduced without the written consent of CLOVES Syndrome Community. CLOVES Syndrome Community is a 501c3 not for profit organization. All donations are tax exempt.