WHERE CAN WE GET HELP?

Doctors and Genetic Counselors
You may have many questions concerning your child's health, and many of these questions can be answered by your family doctor or pediatrician. Your doctor may also refer your child to a biochemical, metabolic, or genetic specialist who will be able to answer more of your questions. For detailed information about the genetics of biotinidase deficiency, you may wish to see a genetic counselor who can discuss with you the chances that other family members will have biotinidase deficiency. A genetic counselor can also tell you about resources in the community that may assist you and your child.

Other families
Being the parent of a child with a rare genetic condition can be a frightening and lonely experience. You may not know any other families who share your hopes and fears concerning biotinidase deficiency. Parents sometimes find it helpful to speak to other families to hear how other children are doing or just to know that they are not alone. Your doctor or genetic counselor may be able to help you contact another family who has a child with biotinidase deficiency. Some organizations such as Parent to Parent and the National Organization for Rare Disorders (NORD), listed below, also offer this service.

Other Organizations
The following organizations may provide additional assistance:

Resources

CLIMB (Children Living with Inherited Metabolic Diseases)
Climb Building
176 Nantwich Road
Crewe, Intl CW2 6BG
United Kingdom
Tel: +44 870 7700 325
Fax: +44 870 7700 327
Email: info@climb.org.uk
Internet: http://www.CLIMB.org.uk

NIH/National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892-3570
Tel: (301)654-3810
Fax: (301)907-8906
Tel: (800)891-5389
Email: nddic@info.niddk.nih.gov
Internet: http://www.niddk.nih.gov

MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: 9203365333
Fax: 9203390995
Tel: 8773365333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)519-3194
Fax: (240)632-9164
Tel: (888)205-2311
TDD: (888)205-3223
Email: gardinfo@nih.gov
Internet: http://www.genome.gov/10000409

Biotinidase Deficiency Family Support Group
218 Lavendar Oasis
Peachtree City, GA 30269
Tel: (770)486-7283
Email: Laurie.Farmer@fda.hhs.gov
Internet: http://biotinidasedeficiency.20m.com