National Organizations related to Maple Syrup Disease
MSUD Family Support Group
24806 SR 119goshen, IN 46526
Phone: 219-862-2992
Fax: 219-862-2012
Email: [email protected]
wesite: http://www.msud-support.org/
Arc 500 East Border Street
Suite 300
Arlington TX 76010
Phone: 202-534-3700
800#: 800-433-5255
email: [email protected]
website: http://www.thearc.org/
Cook for Love, Inc
30 Seneca Street
Dobbs Ferry NY 10522
Phone: 914-674-1025
email: [email protected]
website: http://www.cookforlove.org/
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone: 301-251-4925
800#: 888-205-2311
email: http://rarediseases.info.nih.gov/GARD
Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone: 310-264=0826
email: [email protected]
website: http://www.madisonsfoundation.org/
Maple Syrup Urine Disease Family Support Group
9517 Big Bear Ave
Powell OH 43065
Phone: 614-389-2739
email: [email protected]
website: http://www.msud-support.org/
March of Dimes Birth Defects Foundation
1275 Mamaroneck Ave
White Plains NY 10605
Phone: 914-997-4488
800#: 888-663-4637
email: [email protected]
website: http://www.marchofdimes.com/
9517 Big Bear Ave
Powell OH 43065
Phone: 614-389-2739
email: [email protected]
website: http://www.msud-support.org/
March of Dimes Birth Defects Foundation
1275 Mamaroneck Ave
White Plains NY 10605
Phone: 914-997-4488
800#: 888-663-4637
email: [email protected]
website: http://www.marchofdimes.com/
National Newborn Screening and Genetics Resource Center
1912 W. Anderson Lane, Suite 210
Austin, TX 78757
Phone: 512-454-6419
website: http://genes-r-us.uthscsa.edu/
Genetics Home Reference is a wonderful website that has information on the disease as well
as numerous links to sites for further education and patient support. The website is:
http://ghr.nlm.nih.gov/condition/maple-syrup-urine-disease
1912 W. Anderson Lane, Suite 210
Austin, TX 78757
Phone: 512-454-6419
website: http://genes-r-us.uthscsa.edu/
Genetics Home Reference is a wonderful website that has information on the disease as well
as numerous links to sites for further education and patient support. The website is:
http://ghr.nlm.nih.gov/condition/maple-syrup-urine-disease
Other Resources
http://www.msud-support.org/ :The MSUD Family Support Group is a non-profit 501 (c)(3) organization for those with MSUD and their families and includes health-care professionals and others interested in MSUD. Parent interest in support and
information prompted the first MSUD Symposium for families and professionals in
1982.
http://www.msud-support.org/index.php?/
option=com_content&view=section&id=11&Itemid=95 : The MSUD Support Group
information on diet and recipes for Maple Syrup Urine Disease.
http://www.healthfinder.gov/orgs/hr2432.htm. The Maple Syrup Urine Disease (MSUD) Family Support Group provides opportunities for support and personal contact for those with MSUD and their families.
http://www.newbornscreening.info/Parents/aminoaciddisorders/MSUD.html. This fact sheet has information about MSUD. Every child is different and some of these facts may not apply to your child specifically. Certain treatments may be recommended for some children but not others.
information prompted the first MSUD Symposium for families and professionals in
1982.
http://www.msud-support.org/index.php?/
option=com_content&view=section&id=11&Itemid=95 : The MSUD Support Group
information on diet and recipes for Maple Syrup Urine Disease.
http://www.healthfinder.gov/orgs/hr2432.htm. The Maple Syrup Urine Disease (MSUD) Family Support Group provides opportunities for support and personal contact for those with MSUD and their families.
http://www.newbornscreening.info/Parents/aminoaciddisorders/MSUD.html. This fact sheet has information about MSUD. Every child is different and some of these facts may not apply to your child specifically. Certain treatments may be recommended for some children but not others.
