Related Support Groups and References

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Support Groups and References

The American Academy of Dermatology
930 N. Meacham Rd
PO Box 4014
Schaumburg, Il 60168-4014
Write and request the New Guidelines for Treating Hemangiomas.

The Vascular Birthmarks Foundation, PO BOX 106 Latham, NY 12110 the only international not for profit organization that networks children and adults born with a vascular birthmark into medical treatment. Please visit www.birthmark.org and e-mail Info@birthmark.org Exec. Dir.: Linda Shannon, co-author of the only book on the subject.

The National Vascular Malformations Foundation
8320 Nightingale St.
Dearborn Heights, MI 48127-1202
(313) 274-1243
Mary Burris, President
Provides information and referrals to individuals and families diagnosed with a vascular malformation (portwine, venous, arterial-venous, and lymphatic malformations).

About Face
PO Box 93
Limekiln, PA 19535-0093
(800) 225-3223
Pam Onyx, Director
A support group for people with facial differences.

Faces
PO Box 11082
Chattanooga, TN 37401-2082
(800)3-FACES-3
A national non-profit organization for the craniofacially handicapped.

Forward Face
317 E. 34th Street
New York, NY 10016-4974
A national non-profit organization for patients and families with craniofacial disorders.

Lets Face It
PO Box 711
Concord, MA 01742-0711
(508)371-3186
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.

Hemangioma Hope
8400 Rohl Road
North East, PA 16428-2521
(814) 898-1054
Cindy Dougan, Founder
A compassionate prayer ministry for families affected by hemangiomas. Publish a newsletter and hold an annual picnic for families affected by hemangiomas.

Hemangioma Newsline
PO Box 38264
Greensboro, NC 27438-8264

Karla Hall, Founder
A support organization for families, publishes an informational newsletter for families and physicians.

National Belle Foundation
P.O. Box 385
Gracie Station, NY 10028-0004
(201) 467-9854
Contact: Hyleri Jurofsky
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.

Parents Helping Parents
535 Race Street
Suite 140
San Jose, CA 95126-3452
A family resource for children with special needs.

National Organization for Rare Disorders, Inc.
PO Box 8923
New Fairfield, CT 06812-8923
(203) 746-6518

K-T Support Group
4610 Wooddale Ave
Edina, MN 55424-1139
(612) 925-2596
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
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
(612)682-1322
Contact:Darla O Flanagan
Resource for individuals with a portwine stain

The Sturge-Weber foundation
PO Box 418
Mt. Freedom, NJ 07970-0418
(201)895-4445
Karen Ball, President
Acts as a clearinghouse of information on all aspects of Sturge-Weber syndrome, Klippel-Trenaunay-Weber syndrome and portwine stains.

Neurofibromatosis, inc.
8855 Annapolis Road
Suite 110
Lanham, MD 20706-2924
(800)942-6825
Mary Ann Wilson
Offers information about this neurological genetic disorder and identifies local support groups.

National Neurofibromatosis Foundation
95 Pine St., 16th Floor
New York, New York 10015-1497
Provides information on this neurological genetic disorder with physician referrals for treatment.

National Information Clearinghouse for Infants With Disabilities and Life-Threatening Conditions
Box 1492
Washington, DC 20013-1492
Provides information on disabilities and related issues.

Children Anguished With Lymphatic Malformations
16 River Bend
Montgomery, Il 60538-2955
(630)906-9028
Contact: Tina Baalman
Non-profit organization helping children born with lymphatic abnormalities.

The AVM Support Group of Nevada, Inc.
PO Box 1261
Fernley, NV 89408-1261
Patti DeLap, President
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)
Dedicated to improving the diagnosis, treatment, and quality of life for VHL (Von Hippel-Lindau Disease) patients and their families.

HHT Foundation International, Inc.
PO Box 8087
New Haven, CT 06530-0087
(800)HHT-NETW
In Canada, call (604)596-3418
In other countries, call (313)561-2537 (USA)
HHT (Hereditary Hemorrhagic Telangiectasia-Osler-Weber- Rendu syndromea rare genetic blood vessel disorder). Provides referrals, support, information and research data concerning Hereditary Hemorrhagic Telangiectasia.

National Lymphedema Network
2211 Post Street, Suite 404
San Francisco, CA 94115-3427
Saskia R.J. Thiadens, President
A non-profit organization providing referrals, support, research and extensive information for individuals dealing with lymphedema

Association of Birth Defect Children, Inc.
827 Irma St.
Orlando, FL 32803
(407)245-7035 (voice)
Web site: http://www.birthdefects.org
National clearinghouse to provide information about birth defects and services for children with disabilities.

The Craniofacial Foundation of America
PO Box 269
Chattanooga, TN 37403-
(423) 778-9192 or 800-418-3223
Supports the work of the Tennessee Craniofacial Center offering a varietyof servies for patients and health professionals including support groups and information.

The Hemangioma Support Group
6349 North Commercial
Portland, OR 97217-
(503) 289-6295
The Group provides a forum for exchange of experiences, medical articles and research advice.

The Center for Disfigurement
848 First Colonial Rd.
Virginia Beach, VA 23451-6126
(804) 437-8200
Contact: Dr. David McDaniel
e-mail: mcdaniel@norfolk.infi.net

The Disfigurement Guidance Centre
PO Box 7
Cupar, Fife KY15 4PF
Scotland, UK
Tel: +44 1334 839084/870281

Hemangioma Support Group National Health Information Center
7045 N. Concord Ave.
Portland, OR 97217-
(503) 289-6295
Provides education, information, and emotional support for people with vascular birthmarks and malformations.