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 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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"Resources" on this report.
Copyright 1988, 1990, 1997, 1998, 2007
NORD is very grateful to John B. Mulliken, MD, Director Craniofacial Center, Co-Director Vascular Anomalies Center, Children’s Hospital Boston, for assistance in the preparation of this report.
Synonyms of Maffucci Syndrome
- Dyschondrodysplasia with Hemangiomas
- Enchondromatosis with Multiple Cavernous Hemangiomas
- Hemangiomatosis Chondrodystrophica
- Kast Syndrome
- Multiple Angiomas and Endochondromas
Disorder Subdivisions
General Discussion
Maffucci syndrome is an extremely rare disorder characterized by benign overgrowths of cartilage (enchondromas), skeletal deformities, and dark red, irregular shaped patches of skin, resulting from benign growths on the skin consisting of a mass of blood vessels (hemangiomas). Enchondromas are most often found in certain bones (phalanges) of the hands and feet. Skeletal malformations may include legs that are disproportionate in length. In many cases, bones may tend to fracture easily. Hemangiomas usually appear during early childhood and may be progressive. The exact cause of Maffucci syndrome is unknown.
Organizations related to Maffucci Syndrome
- American Cancer Society, Inc.
1599 Clifton Road NE
Atlanta GA 30329
Phone #: 404-320-3333
800 #: 800-227-2345
e-mail: N/A
Home page: http://www.cancer.org
- Birth Defect Research for Children, Inc.
800 Celebration Ave, Suite 225
Orlando FL 34747
Phone #: 407-566-8304
800 #: --
e-mail: staff@birthdefects.org
Home page: http://www.birthdefects.org
- Friends of Cancer Research
2231 Crystal Drive
Suite 200
Arlington VA 22202
Phone #: 703-302-1503
800 #: N/A
e-mail: info@focr.org
Home page: http://www.focr.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda MD 20892-3675
Phone #: 301-495-4484
800 #: 877-226-4267
e-mail: NIAMSinfo@mail.nih.gov
Home page: http://www.niams.nih.gov/Health_Info
- NIH/National Heart, Lung and Blood Institute
31 Center Drive MSC 2480
Building 31A Rm 4A16
Bethesda MD 20892-2480
Phone #: 301-592-8573
800 #: --
e-mail: nhlbiinfo@rover.nhlbi.nih.gov
Home page: http://www.nhlbi.nih.gov/
- Rare Cancer Alliance
1649 North Pacana Way
Green Valley AZ 85614
Phone #: 520-625-5495
800 #: --
e-mail: sharon.lane@rare-cancer.org
Home page: http://www.rare-cancer.org
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