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Animal and Cellular Models of Barth Syndrome
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Gene Replacement Therapy for Barth Syndrome
TAZPOWER
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Barth Syndrome
What is Barth Syndrome?
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Barth Syndrome Diagnostic Laboratory Testing
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Newly Diagnosed
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Introduction
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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
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Online Support Groups & Yoga
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BSF 2016 Conference
BSF 2014 Conference
BSF 2012 Conference
BSF 2010 Conference
Webinars
Potential Use of Entresto
2019 Town Hall
Strength, Stamina and Fatigue in Barth Syndrome
Cardiac Aspects of Barth syndrome
The Role of MLCL:CL as a diagnostic assay for Barth syndrome
Gene Replacement Therapy in the Barth Syndrome Knockout Mouse
International Affiliates
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Meet The People We Serve
Remember the Girls
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Elamipretide Petition
Community Petition Cover Letter
KOL Letter Elamipretide
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Donate
Events
Events
February Heart Month
Rare Disease Day
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Tributes
Timothy Monahan
Will McCurdy Fund for the Advancement of Therapies for Barth Syndrome
Other Ways To Give
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$20 for #BARTH2020
Participate in Research
Fundraising Toolkit
Set Up A Fundraiser
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BSF 2020 Conference
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January 2020
November 2019
October 2019
September 2019
July 2019
March 2019
February 2019
January 2019
December2018
From the Desk of the Executive Director
Kate McCurdy named 2020 Board Chair
BSF charts new paths with FDA
The Power of Patients Harnessing quality registries to Understand Your Rare Disease
BSF Beat
BSF Beat Winter 2019
BSF Beat Spring 2019
Barth Community ENews
January 2020
News Archives
Video Archives
Calendar
About BSF
Mission & Organization
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
Connect with Community
Contact Us
Careers
Research
Researcher Resources
2021 BSF Grant Program
2020 BSF Science and Medicine Symposium
Grants Awarded
Animal and Cellular Models of Barth Syndrome
Biobanked Patient Samples and Transformed Cell Lines
Barth Syndrome Registry and Repository
Human Tafazzin (TAZ) Gene Variants Database
Clinical Trials
Clinical Trials
CARDIOMAN
Gene Replacement Therapy for Barth Syndrome
TAZPOWER
Rare Disease Webinar
Portfolio Review
Scientific and Medical Journal Articles
Bibliography
Open Access Articles
Highlights of Clinical Knowledge
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
Families Affected by Barth Syndrome
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
Online Support Groups & Yoga
Clinician Resources
Videos and Webinars
Conference Videos
BSF 2018 Conference
BSF 2016 Conference
BSF 2014 Conference
BSF 2012 Conference
BSF 2010 Conference
Webinars
Potential Use of Entresto
2019 Town Hall
Strength, Stamina and Fatigue in Barth Syndrome
Cardiac Aspects of Barth syndrome
The Role of MLCL:CL as a diagnostic assay for Barth syndrome
Gene Replacement Therapy in the Barth Syndrome Knockout Mouse
International Affiliates
Meet Our Community
Meet The People We Serve
Remember the Girls
Meet Our Clinicians and Scientists
Advocacy
Elamipretide Petition
Community Petition Cover Letter
KOL Letter Elamipretide
Ways to Help
Donate
Events
Events
February Heart Month
Rare Disease Day
Tributes
Tributes
Timothy Monahan
Will McCurdy Fund for the Advancement of Therapies for Barth Syndrome
Other Ways To Give
Previous Fundraisers
$20 for #BARTH2020
Participate in Research
Fundraising Toolkit
Set Up A Fundraiser
News & Events
What's New
Press Releases
COVID-19 Precautions
PFDD Meeting
About
What You Need to Know
Live Streaming
Voice of the Patient
Sponsors
International Conference
Call for Speaker Abstracts
BSF 2020 Conference
Conference Programs
Newsletter
Newsletter
E-News
Research Brief
January 2020
November 2019
October 2019
September 2019
July 2019
March 2019
February 2019
January 2019
December2018
From the Desk of the Executive Director
Kate McCurdy named 2020 Board Chair
BSF charts new paths with FDA
The Power of Patients Harnessing quality registries to Understand Your Rare Disease
BSF Beat
BSF Beat Winter 2019
BSF Beat Spring 2019
Barth Community ENews
January 2020
News Archives
Video Archives
Calendar
Donate
BSF Beat
News from Barth Syndrome Foundation
BSF Beat
What's New
Press Releases
COVID-19 Precautions
PFDD Meeting
About
What You Need to Know
Live Streaming
Voice of the Patient
Sponsors
International Conference
Call for Speaker Abstracts
BSF 2020 Conference
Conference Programs
Newsletter
Newsletter
E-News
Research Brief
January 2020
November 2019
October 2019
September 2019
July 2019
March 2019
February 2019
January 2019
December2018
From the Desk of the Executive Director
Kate McCurdy named 2020 Board Chair
BSF charts new paths with FDA
The Power of Patients Harnessing quality registries to Understand Your Rare Disease
BSF Beat
BSF Beat Winter 2019
BSF Beat Spring 2019
Barth Community ENews
January 2020
News Archives
Video Archives
Calendar
Winter 2019
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