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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. The American Academy of Dermatology 930 N. Meacham Road, P.0. Box 4014 Schaumburg, IL 60168-4014 (847) 330-0230 Fax (847) 330-0050 www.aad.org Write and request the "New Guidelines for Treating Hemangiomas." The Vascular Birthmarks Foundation P.O. Box l06 Latham, NY 12110-0106 (877)823-4646 hvbf@aol.com 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 (313) 274-1243 Contact: 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 P.O. Box 93 Limekiln, PA 19535-0093 (800) 225-3223 Contact: Pam Onyx, Director A support group for people with facial differences. Faces P.0. Box 11082 Chattanooga, TN 37401-2082 (800) 3-FACES-3 Contact: Lynn Mayfield, Director 9 AM-5 PM (EST) A national non-profit organization for the craniofacially handicapped. Forward Face 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 (360) 676-7325 www.faceit.org letsfaceit@faceit.org 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 Newsline P.0. Box 0358 Findlay, OH 45839-0358 www.hnline.org hemangnews@msn.com (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 (800) 535-3643 www.ccakids.com 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 (203) 746-6518 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 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) www.sturge-weber.com Contact: Karen Ball, President kball@sturge-weber.com 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 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 (800) 323-7938 mwong@nf.org 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 Box 1492 Washington, DC 20013-1492 A clearinghouse of information on disabilities and related issues. Children Anguished with Lymphatic Malformations 16 River Bend Montgomery, IL 60538-2955 Contact: Tina Baalman A non-profit organization helping children born with lymphatic abnormalities. 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 (800) 448-6389 www.hht.org 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 (407) 895-0802 www.birthdefects.org 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 (503) 289-6295 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 Scotland, UK Tel: +44 1334 839084/870281 Contact: Doreen Trust Hemangioma Support Group National Health Information Center 7045 N. Concord Avenue Portland, OR 97217-5439 (503) 289-6295 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:
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. It provides:
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