Printed materials available in:
Chinese
English
German
French
Italian
Portuguese
Spanish
Swedish
Information provided for:
Affected individuals
Families of affected individuals
Care providers
Parents
Health care professionals
Researchers
Teachers
Students
Media
Range of services include:
Genetic information
Awareness Programs
Advocacy
E-mail list
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Website
Newsletter
Journal articles on condition
Bibliography
Research updates
Video(s)/Movie(s)
Resource guide
Student materials
Membership directory
Conferences/workshops for:
Affected individuals and/or families
Researchers
Professionals
Cohort Development:
Registry of affected individuals
Blood and Tissue Banking
Disease Characterization:
Epidemiological studies
Phenotype/genotype correlation studies
Research Management:
Linking researchers and families
Awarding research grants
Major research interests of the organization:
We are interested in providing “seed grant funding” to up and coming young investigators; we are also interested in attracting experienced investigators new to the field of BTHS basic science or clinical research for the testing of initial hypotheses and collection of preliminary data leading to successful long-term funding by the National Institutes of Health (NIH) and other major granting institutions around the world.
