Tilted Forum Project Discussion Community - View Single Post - Wolf-Hirschhorn Syndrome?

runtuff · 01-31-2005, 06:13 PM

quick google returns this excellent article. quite technical, no good news but???

http://www.emedicine.com/ped/topic2446.htm

"Medical Care: Medical care is supportive. No treatment exists for the underlying disorder.""

Patient Education:

Up-to-date information about the syndrome should be made available to the families through the following organizations:
National Organization for Rare Disorders, Inc. (NORD), PO Box 8923, New Fairfield, CT 06812-8923; phone, 800-999-6673; fax, 203-746-6481; e-mail, orphan@nord-rdb.com.
Chromosome Deletion Outreach, Inc., PO Box 724, Boca Raton, FL 33429-0724; phone, 561-391-5098; e-mail, cdo@worldnet.att.net.

01-31-2005, 06:13 PM	#2 (permalink)
runtuff Crazy	quick google returns this excellent article. quite technical, no good news but??? http://www.emedicine.com/ped/topic2446.htm "Medical Care: Medical care is supportive. No treatment exists for the underlying disorder."" Patient Education: Up-to-date information about the syndrome should be made available to the families through the following organizations: National Organization for Rare Disorders, Inc. (NORD), PO Box 8923, New Fairfield, CT 06812-8923; phone, 800-999-6673; fax, 203-746-6481; e-mail, orphan@nord-rdb.com. Chromosome Deletion Outreach, Inc., PO Box 724, Boca Raton, FL 33429-0724; phone, 561-391-5098; e-mail, cdo@worldnet.att.net.