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Fact sheets for the eleven NBS disorders (PDF)
Have been developed by the Michigan Department of Community Health
for eleven disorders including Biotinidase Disorder, Congenital
Adrenal Hyperplasia, Glactosemia, Homocystinuria, MCAD Deficiency,
Maple Urine Syrup Disease, Citrullinemia and ASA, PKU,
Congenital Hyothyroidism, and sickle Cell Anemia. Each sheet describes
the disorder and lists resources and support service to assist a
family of child with the disorder.
rarediseases-MICHIGAN
An 'International Rare Disease Support Network' eGroup open for anyone
interested in making friends, sharing information and providing
support for citizens of the Michigan.
Support Group Directory for Families of Children with Genetic
Disorders
Designed for use by families, as well as health and human service
professionals who work with children and adults affected by known or
suspected genetic diseases, birth defects, and related conditions in
Michigan. It contains information about support groups and
organizations with a contact person or chapter in the state of
Michigan. |
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