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Impact of raising children with Barth syndrome on Parental Health-Related Quality of Life and Family Functioning
Preprint vs Peer Review
168-week open-label extension results of TAZPOWER
Thrombotic microangiopathy following systemic AAV administration is dependent on anti-capsid antibodies
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About BSF
Mission & Organization
Strategic Plan
Legal & Financial
Legal Documents
Annual Reports & Financials
Policies & Procedures
Board Minutes
Leadership & Staff
Board of Directors
Audit Committee
Board Development Committee
Executive Committee
Finance and Investments Committee
Fundraising Committee
Policies and Agreements Committee
Staff
Scientific & Medical Advisory Board
International Affliates
Partners
Connect with Community
Contact Us
Careers
Research
Research Home
2025 BSF Grant Program
Researcher Resources
Active Grants
Strategic Initiatives Program
Animal and Cellular Models of Barth Syndrome
Biobanked Patient Samples and Transformed Cell Lines
Barth Syndrome Registry and Repository
Human Tafazzin Gene Variants Database
Clinical Trials
CARDIOMAN
Gene Replacement Therapy for Barth Syndrome
TAZPOWER
Portfolio Review
Varner Award
Understanding Survival in Barth Syndrome
Barth Syndrome
What is Barth Syndrome?
Approaches to Diagnosis
International Classification of Disease
Principal Clinical Diagnostic Criteria
Other Important Findings by System
Clinical Manifestations
Barth Syndrome Diagnostic Laboratory Testing
Biomarker and Genetic Testing Facilities for Barth Syndrome
References
Newly Diagnosed
Family Resources
Tools for School/ Families
Introduction
Developmental Issues
Protections of Students with Disabilities
Choices of Educational Environments
Preparing the Master File
Communicating with Schools
Resources
Tools for School/ Educators
Introduction
What is Barth Syndrome
Physical Challenges
Some Neurodevelopmental Challenges
Social and Emotional Challenges
Suggestions and Advice for Educators
Warning Signs of Physical Distress and Tips for Care
Resources
Care Management Toolbox
Finding Care
Organizing My Medical Binder
Emergency Department Guidance
My Blood Test Results
My Medical Forms
Resources
COVID-19 Health Advisories
FACT Sheets
Fact Sheet Library
Genetics Fact Sheet
Female Carriers
Research Summaries
Summaries for Barth syndrome Community
Gene therapy and the role of exercise
Cell Stress Response Impacts Energy Use in Heart
How loss of TAFAZZIN function ignites mitochondrial dysfunction
Evaluation of Barth syndrome Manifestations in Female Carrier Mice
Impact of raising children with Barth syndrome on Parental Health-Related Quality of Life and Family Functioning
Preprint vs Peer Review
168-week open-label extension results of TAZPOWER
Thrombotic microangiopathy following systemic AAV administration is dependent on anti-capsid antibodies
Clinician Resources
Videos and Webinars
Barth Syndrome Foundation Recordings
Meet Our Community
Meet The People We Serve
Remember the Girls
Meet Our Clinicians and Scientists
Emergency Reflief
Barth Cares
Advocacy
U.S. Food & Drug Administration (FDA) Advisory Committee Review of Elamipretide
Elamipretide
Barth Syndrome Awareness Day
PFDD Meeting
About
What You Need to Know
Live Streaming
Voice of the Patient
Sponsors
Ways to Help
Donate
Participate in Research
Mayo Clinic Research Study
Barth Tired Study
Research GUID
BSF Swag Shop
News & Events
Blogs
Upcoming Events
Newsletter
Press Releases
International Conference
2024 Barth Syndrome Conference
Conference Programs
Calendar
Donate
News & Events
Blogs
Upcoming Events
Newsletter
Press Releases
International Conference
2024 Barth Syndrome Conference
Conference Programs
Calendar
AdComm: In-person AdComm Meeting
Thursday, October 10, 2024
8:15 am
5:30 pm
FDA headquarters in White Oak, MD
10903 New Hampshire Ave
Silver Spring ,
MD
20903
US
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