Useful Websites
Several of the large vascular anomalies centers have wonderful websites. We have taken the liberty of providing the link to the Boston Children’s Hospital and Cincinnati Children’s Hospital Vascular Anomalies Clinics. In addition, there are other websites which may be useful. Feel free to explore these and to let us know if there are others which you have found to be helpful, as we update this site.
Several of the large vascular anomalies centers have wonderful websites. We have taken the liberty of providing the link to the Boston Children’s Hospital and Cincinnati Children’s Hospital Vascular Anomalies Clinics. In addition, there are other websites which may be useful. Feel free to explore these and to let us know if there are others which you have found to be helpful, as we update this site.
We are glad to hear about additions, subtractions, comments (email us at jblat@med.unc.edu); *support groups
GENERAL alphabetically (press control and click to access blue websites)
Boston Children’s Hospital
CaNVAS
Cincinnati Children’s Hospital
Clinicaltrials.gov
International Society for the Study of Vascular Anomalies (ISSVA)
*National Organization for Rare Disorders (NORD)
An educational link for organizations link for organizations and individuals concernsed with a rare disorder. They monitor legislation, research diseases, award grants and network individuals.
Phone: 203-744-0100
Information on medicine and healthcare assistance programs.
Phone: 800-503-6897
This is the website for Operation Smile a not-for-profit international that treats facial deformities.
Phone: (Domestic Medical Program) 88-OPSmile or 888-677-6453
PIK3CA Related Conditions Collaborative Research Network
This is research arm which works through the Cloves Syndrome Community (see below).
Email: research@clovessyndrome.org
Section 504
Section 504 of the Rehabilitation Act of 1973 ensures that individuals with disabilities are given protection from discrimination. Often at school, this means that a child in need of accommodations based on a disability that affects a ‘major life activity’ is allowed reasonable accommodations as determined by a 504 Committee. If you or your child needs accommodations under Section 504, or if you have questions, contact your social worker or your child’s school.
Supplemental Security Income (SSI)
The SSI program makes payments to those age 65 or older, blind, or disabled persons (including children) who have limited income and resources. Social Security has a strict definition of disability for children (condition must seriously limit has or her activities; and must have lasted, or be expected to last, at least 1 year or result in death).
Phone: 1-800-772-1213
The United Healthcare Children’s Foundation (UHCCF)
A 501(c)(3) charitable organization that provides that medical grants to help children gain access to health-related services not covered, or not fully covered, by their parents’ commercial health insurance plan. Families can receive up to $5,000 annually per child ($10,000 lifetime maximum per child). **See your Social Worker for assistance with application**
Phone: 855-698-4223
Vascular Anomaly and Lymphedema Mutation Database
Vascular Anomalies Center at Texas Children’s Hospital | Texas Children’s Hospital
SPECIFIC DISORDERS
Arteriovenous Malformations
Support group for patients and families that have had an Arteriovenous Malformations (AVM).
CLOVES
Supports, educates, empowers and improves the lives of those affected by CLOVES Syndrome.
Phone: 207-281-2130
FAVA
*Project FAVA
Hemangiomas
A disease awareness website created by Pierre Fabre Pharmaceuticals Inc.
National Organization for Vascular Anomalies (NOVA)
Hemangioma and vascular malformation advocacy and support. Includes physician list, related support services, patient networking, blogs, and transportation services.
PHACE Syndrome
Vascular Birthmarks Foundation
Support and advocacy, including factual information, patient networking, physician list, newsletter, transportation, and insurance advocacy resources.
Phone: 877-VBF-LOOK (Days)
877-VBF-4646 (evenings and Weekends)
Hereditary Hemorrhagic Telangiectasia (HHT)
UNC HHT Center of Excellence
Cure HHT Foundation
*Hereditary Hemorrhagic Telangiectasia (HHT) Foundation
HHT provides advocacy and support. Includes factual information, research updates, helpful links, and a newsletter.
Phone: 410-357-9932
HHT Mutation Database
Klippel Trenaunay (KTS)
*Klippel-Trenaunay (KTS) Support Group
Vascular Malformation advocacy and support. Includes factual information and resources.
Phone: 952-925-2596
Lymphatic Anomalies
*Lymphatic education & Research Network (LE&RN)
LE&RN fosters and supports research reagarding understanding of the lymphatic system. Website has information on clinical trials and research updates.
Phone: 516-625-9675
*Lymphangiomatosis & Gorham Disease Alliance (LGDA)
Promotes research that will identify effective treatments and ultimately a cure for these diseases. Provides support to patients and their families; education and hope to those affected by these rare lymphatic malformations. **Website also has information on the International LGDA Registry for Lymphatic Malformations**
Phone: 561-441-9766
Lymphedema
Brylan’s Feat Foundation
*National Lymphedema Network, Inc.
Advocacy and support for primary and secondary lymphedema. Includes factual information, physician and therapy centers, resources, and a newsletter.
Phone: 1-800-541-3259 or 510-208-3200
North Carolina Lymphedema Treatment Facilites
Physical Therapy for Lymphedema
M-CM
Megalencephaly-Capillary Malformations
Proteus
Proteus Syndrome Foundation
PTEN
*PTEN Hamartoma
Sturge Weber Syndrome (SWS)
Support and information specific to Sturge- Weber syndrome, including centers of Excellence, factual informtaion and resources, and research updates. Patient information is available in English and Spanish.
Phone: 973-895-4445