Support Groups and Other Resources
Support groups are an invaluable resource to anyone dealing with the difficulties of having a child with a vascular birthmark. These groups can provide names of other families affected with similar conditions, referrals to physicians who have treated similar conditions successfully, and information on the latest research into new treatment options, and developments in the cause of these birth defects.
Please feel free to contact any of the resources listed below.
NOVA - National Organization of Vascular Anomalies
P.O. Box 8711-104
Six Forks Rd. PMB 126
Raleigh, NC 27615
The National Organization of Vascular Anomalies is a nonprofit organization providing assistance to individuals affected by hemangiomas & vascular malformations.
The American Academy of Dermatology
930 N. Meacham Road, P.0. Box 4014
Schaumburg, IL 60168-4014
(847) 330-0230 Fax (847) 330-0050
Write and request the "New Guidelines for Treating Hemangiomas."
The Vascular Birthmarks Foundation
P.O. Box l06
Latham, NY 12110-0106
Linda Shannon is Executive Director, and Milton Waner, M.D., is Medical Director. The organization is a non-profit resource providing the latest and most accurate information on the proper diagnosis and treatment of hemangiomas and vascular birthmarks.
The National Vascular Malformations Foundation
8320 Nightingale Street
Dearborn Heights, MI 48127-1202
Contact: Mary Burris, President
Provides information and referrals to individuals and families diagnosed with a vascular malformation (portwine, venous, arterial-venous, and lymphatic malformations).
P.O. Box 93
Limekiln, PA 19535-0093
Contact: Pam Onyx, Director
A support group for people with facial differences.
P.0. Box 11082
Chattanooga, TN 37401-2082
Contact: Lynn Mayfield, Director
9 AM-5 PM (EST)
A national non-profit organization for the craniofacially handicapped.
317 E. 34th Street, Suite 901
New York, NY 10016-4974
(800) 393-FACE (3223)
A national non-profit organization for patients and families with craniofacial disorders.
Let's Face It
P.0. Box 29972
Bellingham, WA 98228-1972
An informational and support network for people with facial differences, their families, friends and professionals. They publish an excellent resource book, "Resources for People with Facial Difference."
P.0. Box 0358
Findlay, OH 45839-0358
(419) 425-1593 fax/phone
Contact: Karla Hall, Founder
A support organization for families, which publishes an informational newsletter for families and physicians.
National Belle Foundation
P.0. Box 385
Gracie Station, NY 10028-0004
Contact: Hyleri Jurofsky
A charitable organization to aid children with physical and cosmetic deformities.
Hemangioma Research and Education
43 Soundview Lane
New Canaan, CT 06840-2732
Contact: Pam Wicker
A newsletter for patients, families, and medical professionals dealing with hemangiomas and vascular malformations.
Children's Craniofacial Association
13140 Coit Road, Suite 307
Dallas, TX 75240
Contact: Charlene Smith, Director
This group supports the needs of cranio-facial patients and families. They offer physician referral, nonmedical patient assistance, yearly family retreats, and educational programs.
National Organization for Rare Disorders, Inc.
P.0. Box 8923
New Fairfield, CT 06812-8923
An educational link for organizations and individuals concerned with a rare disorder. Monitors legislation, researches diseases, awards grant money and networks with individuals.
K-T Support Group
4610 Wooddale Avenue
Edina, MN 55424-1139
A group which provides information and support for Klippel-Trenaunay syndrome patients and their families.
Proteous Syndrome Foundation
609 SE Mount Vernon Drive
Blue Springs, MO 64014-5417
An organization founded to educate, support and raise money for grants and research toward eventually finding a cure for Proteus syndrome.
Minnesota Portwine Stain Association
304 17th Street South
Buffalo, MN 55313-2410
Contact: Darla 0' Flanagan
A resource for individuals with a portwine stain.
Sturge-Weber Syndrome Community
P.O. Box 24890
Lexington, KY 40524-4890
Contact: Glenda Ethington
The Sturge-Weber Foundation
P.O. Box 4l8
Mt. Freedom, NJ 07970-0418
(973) 895-4445 or (800) 627-5482 - 9 AM-4 PM (EST)
Contact: Karen Ball, President
A clearinghouse of information on all aspects of Sturge-Weber syndrome, Klippel-Trenaunay-Weber syndrome and portwine stains.
8855 Annapolis Road, Suite 110
Lanham, MD 20706-2924
Contact: Mary Ann Wilson
This group offers information about this neurological genetic disorder and identifies local support groups.
National Neurofibromatosis Foundation
95 Pine Street, 16th Floor
New York, New York 10015-1497
A foundation which provides information on this neurological genetic disorder with physician referrals for treatment.
National Information Clearinghouse for Infants with Disabilities and Life-threatening Conditions
Washington, DC 20013-1492
A clearinghouse of information on disabilities and related issues.
The AVM Support Group of Nevada, Inc. P0 Box 1261
Fernley, NV 89408-1261
Contact: Patti DeLap, President
A network of people who have or have had an AVM (arterio-venous malformation) and suffered from the various effects.
VHL Family Alliance 171 Clinton Road
Brookline, MA 02146-5815
(800) 767-4VHL (767-4845)
This group is dedicated to improving the diagnosis, treatment, and quality of life for VHL (Von Hippel-Lindau Disease) patients and their families.
HHT Foundation International, Inc. P.0. Box 329
Monkton, MD 21111
HHT (Hereditary Hemorrhagic Telangiectasia-Osler-Weber-Rendu syndrome - is a rare genetic blood vessel disorder). HHT provides referrals, support, information and research data on this condition.
National Lymphedema Network 2211 Post Street, Suite 404
San Francisco, CA 94115-3427
Contact: Saskia R.J. Thiadens, President
A non-profit organization providing referrals, support, research and extensive information for individuals dealing with lymphedema.
Birth Defect Research for Children, Inc. 930 Woodcock Road, Suite 225
Orlando, FL 32803
A national clearinghouse to provide information about birth defects and services for children with disabilities.
The Craniofacial Foundation of America 975 & 3rd St.
Chattanooga, TN 37403
(423) 778-9192 or 800-418-3223
A group which supports the work of the Tennessee Craniofacial Center offering a variety of services for patients and health professionals including support groups and information.
The Hemangioma Support Group 6349 North Commercial
Portland, OR 97217-2022
This group provides a forum for exchange of experiences, medical articles and research advice.
The Center for Disfigurement 848 First Colonial Road
Virginia Beach, VA 23451-6126
Contact: David McDaniel, M.D.
The Disfigurement Guidance Centre P.0. Box 7
Cupar, Fife KY15 4PF
Tel: +44 1334 839084/870281
Contact: Doreen Trust
Hemangioma Support Group National Health Information Center 7045 N. Concord Avenue
Portland, OR 97217-5439
A group which provides education, information, and emotional support for people with vascular birthmarks and malformations.
Parent Care, Inc. 9041 Colgate Street
Indianapolis, IN 46268-1210
A coalition of parents and professionals dedicated to improving neonatal intensive care experiences.
Ronald McDonald House
The first Ronald McDonald House was started in Philadelphia in 1974. Since then, the number has grown to 124 in the United States. Each house is independently owned and operated. More than 1.5 million families have enjoyed the family hospitality of a Ronald McDonald House.
Funding for the houses comes from the money donated at McDonalds around the country and by individuals, companies, and various service organizations.
The house is a "home-away from home" for families whose child requires treatment at a local hospital. It provides a home-like atmosphere as an antidote to the stress a family experiences while seeking medical treatment for their child.
Each house is different, but here is an example of what the Ronald McDonald House in Little Rock, Arkansas offers:
You are eligible to stay at the Little Rock Ronald McDonald House if:
- you live outside a 50-mile radius of Little Rock. Your child is 21 years of age or younger.
- your child is being served for a physical illness or injury.
- you're an adult receiving out-patient cancer treatments at local cancer facilities.
- you have been referred by a hospital social worker or patient representative who arranges your reservation.
The Arkansas Ronald McDonald House has 26 bedrooms, and a one bedroom apartment for long term stays. It's a non-smoking facility with handicapped access.
- one private bedroom with lavatory per family for as many as four family members.
- a one-bedroom apartment for long term stays.
- bed and bath linens.
- two fully equipped kitchen areas.
- free laundry facilities.
- two living areas with TV, a VCR, Nintendo, and Sega Genesis
- children's inside and outside play areas.
- $10 per night. If you're unable to meet this request, special arrangements can be made. No family is ever turned away because of an inability to pay.