Biotinidase Deficiency Family Support Group

General Organizational Information
Organization Name: 
Biotinidase Deficiency Family Support Group
Year Established: 
2009
Type of organization: 
International Condition(s)-specific organization
Mission Statement: 
Our mission is to establish a forum to exchange information about biotinidase deficiency among affected individuals and with medical professionals and to advocate for the inclusion of biotinidase testing in all newborn screening programs.
Status of organization: 
Unincorporated non-profit
Professional/Medical Board?: 
No
501(c)3 Status?: 
No
Paid staff?: 
No
Board of Directors?: 
No
Serves the following conditions
Diseases: 
Biotinidase Deficiency
Organizational Contact Information
First Name: 
Laurie
Middle Initial: 
C
Last Name: 
Farmer
Address: 
218 Lavender Oasis
Peachtree City, 30269
United States
See map: Google Maps
Phone: 
+1 770 486 7283
Email: 
Laurie.Farmer@fda.hhs.gov
ListServe: 
Yes look on website for info
Website Address: 
http://biotinidasedeficiency.20m.com
Resources and Services Provided
Languages spoken: 
English
Information provided for: 
Affected individuals
Care providers
Families of affected individuals
The public
Teachers
Legislators
Media
Students
Researchers
Other
Range of services include: 
Referrals to research studies
Referrals for non-medical services
Other
Peer-to-peer counseling
Other
Educational materials include: 
Resource guide
Other
Conferences/workshops for: 
Affected individuals and/or families
Other
Financial assistance for: 
Other
Combined Federal Campaign (CFC)
#80146
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008-2369
Tel: 202.966.5557 Fax: 202.966.8553
info@geneticalliance.org