Useful Sites for Families Living With Galactosemia
Links to Web Information of Medical Interest
Related Resources
- Canadian Galactosemia Resource
- European Galactosemia support group
- State Departments of Health
- CDC Search of State Health Depts
- Gene Therapy for Metabolic Disorders
- Pediatric Database (PEDBASE)
- National Institutes of Health Search Form
- The Family Village Same Diagnosis Message Board
- Regional Genetic Networks
Operated by a Canadian woman with Galactosemia
Formed in June 1997 "to promote the education and social welfare of persons affected of Galactosaemia" in Europe.
A list of websites for the Department of Health in each state of the U.S.
Center for Disease Control's search page
Program Information on the Gene Therapy for Metabolic Disorders Program, directed by Dr. Chester B. Whitley
The Pediatric Database, designed by Dr. Alan Gandy (MD.,PhD.,FRCP(C)), serves to provide information on various pediatric disorders.
From this utility you can search the contents of over 100 web and gopher servers at the National Institutes of Health. It is designed to assist you in locating biomedical information.
Compiles messages posted by parents or adults with disabilities who would like to communicate with others with a similar diagnosis, or those whose child has the same diagnosis. Includes posts by parents with galactosemic children.
Other Sites of Interest
- American LIver Foundation
- The Genetics and Molecular Biology Program Faculty Members of Emory University.
- Save Babies Through Screening Foundation
- OMIM Information on Galactosemia
- Gastroenterology Consultants
American Liver Foundation's information on galactosemia.
The Save Babies Through Screening Foundation is dedicated to raising the awareness of inborn errors of the newborn. A greater understanding and awareness of metabolic disorders will help to prevent unnecessary mental retardation and deaths since many metabolic disorders can be effectively treated.
This database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere, and developed by the National Center for Biotechnology Information.
Gastroenterology Consultants, PC maintain a galactosemia page. Their site provides information about gastroenterology and liver disease as well as their practice in Connecticut.
Diet Links
- Feeding Children with Special Needs
- National Food Distribution Center
designed to provide resources for Child Nutrition Program providers, teachers and parents of children with special feeding needs
non-profit Canadian Food Bank
Special Education Links
- Wrightslaw
- Assistative Technology
- Adult Metabolic Transition Project
You'll find hundreds of articles, cases, newsletters, and other information about special education law and advocacy in the Wrightslaw Libraries. Parents, advocates, educators, and attorneys come to Wrightslaw for accurate, up-to-date information about advocacy for children with disabilities.
designed to provide information on assistive technology to assist others in basic information on assistive technology and links to other sites on assistive technology.
To provide information and assistance to young adults with metabolic disorders transitioning to adult care. To provide knowledge and assistance to their health care providers.
