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Fatigue in Barth Syndrome Study
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
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
Clinician Resources
Videos and Webinars
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
Conference Videos
BSF 2018 Conference
BSF 2016 Conference
BSF 2014 Conference
BSF 2012 Conference
BSF 2010 Conference
Meet Our Community
Meet The People We Serve
Remember the Girls
Meet Our Clinicians and Scientists
COVID-19 Precautions
Send BSF eCards
Emergency Reflief
Barth Cares
Advocacy
Elamipretide
Advocacy Updates
Barth Syndrome Awareness Day
Legislation to Watch
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
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2024 Barth Syndrome Conference
Newsletter
Press Releases
International Conference
2024 Barth Syndrome Conference
Conference Programs
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Calendar
FUNCTION OF TAFAZZIN IN ANTIBACTERIAL IMMUNITY
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
Iris L. Gonzalez Prize
2024 BSF Grant Program
Researcher Resources
Active Grants
Strategic Initiatives Program
Virtual Symposiums
2022 SciMedSymposium
2020 BSF Science and Medicine Symposium
Fatigue in Barth Syndrome Study
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
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
Clinician Resources
Videos and Webinars
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
Conference Videos
BSF 2018 Conference
BSF 2016 Conference
BSF 2014 Conference
BSF 2012 Conference
BSF 2010 Conference
Meet Our Community
Meet The People We Serve
Remember the Girls
Meet Our Clinicians and Scientists
COVID-19 Precautions
Send BSF eCards
Emergency Reflief
Barth Cares
Advocacy
Elamipretide
Advocacy Updates
Barth Syndrome Awareness Day
Legislation to Watch
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
2024 Barth Syndrome Conference
Newsletter
Press Releases
International Conference
2024 Barth Syndrome Conference
Conference Programs
Video Archives
Calendar
FUNCTION OF TAFAZZIN IN ANTIBACTERIAL IMMUNITY
Donate
Family Attendee Registration
International Conference
Blogs
Upcoming Events
2024 Barth Syndrome Conference
Newsletter
Press Releases
International Conference
2024 Barth Syndrome Conference
Conference Programs
Video Archives
Calendar
Attendee Name
Prefix
Mr.
Mrs.
Ms.
Miss
Dr.
Prefix
First Name *
Middle
Last Name *
Suffix
Date of Birth
Month
January
February
March
April
May
June
July
August
September
October
November
December
Month
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Day
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31
Day
/
Year
Relationship to Barth Individual
Relationship to Barth Individual
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BTHS Individual
Spouse
Child of BTHS Individual
Parent/ Guardian
Sibling
Grandparent
Aunt/ Uncle
Cousin
Friend
Other
Gender
Gender
-----
Male
Female
Email (Required)
Address (Line 1) (Required)
Address Line 2
City (Required)
State/Province
Country (Required)
Select a Country...
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Country (Required)
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Afghanistan
Albania
Algeria
American Samoa
Andorra
Angola
Anguilla
Antarctica
Antigua and Barbuda
Argentina
Armenia
Aruba
Australia
Austria
Azerbaijan
Bahamas
Bahrain
Bangladesh
Barbados
Belarus
Belgium
Belize
Benin
Bermuda
Bhutan
Bolivia
Bosnia and Herzegovina
Botswana
Bouvet Island
Brazil
British Indian Ocean Territory
Brunei Darussalam
Bulgaria
Burkina Faso
Burundi
Cambodia
Cameroon
Canada
Cape Verde
Cayman Islands
Central African Republic
Chad
Chile
China
Christmas Island
Cocos (Keeling) Islands
Colombia
Comoros
Congo
Congo, The Democratic Republic Of The
Cook Islands
Costa Rica
Croatia
Cuba
Cyprus
Czech Republic
Côte D'Ivoire
Denmark
Djibouti
Dominica
Dominican Republic
Ecuador
Egypt
El Salvador
Equatorial Guinea
Eritrea
Estonia
Ethiopia
Falkland Islands (Malvinas)
Faroe Islands
Fiji
Finland
France
French Guiana
French Polynesia
French Southern Territories
Gabon
Gambia
Georgia
Germany
Ghana
Gibraltar
Greece
Greenland
Grenada
Guadeloupe
Guam
Guatemala
Guernsey
Guinea
Guinea-Bissau
Guyana
Haiti
Heard and McDonald Islands
Holy See (Vatican City State)
Honduras
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Hungary
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India
Indonesia
Iran (Islamic Republic Of)
Iraq
Ireland
Isle of Man
Israel
Italy
Jamaica
Japan
Jersey
Jordan
Kazakhstan
Kenya
Kiribati
Korea, Democratic People's Republic Of
Korea, Republic of
Kuwait
Kyrgyzstan
Lao People's Democratic Republic
Latvia
Lebanon
Lesotho
Liberia
Libyan Arab Jamahiriya
Liechtenstein
Lithuania
Luxembourg
Macao
Macedonia, the Former Yugoslav Republic Of
Madagascar
Malawi
Malaysia
Maldives
Mali
Malta
Marshall Islands
Martinique
Mauritania
Mauritius
Mayotte
Mexico
Micronesia, Federated States Of
Moldova (the Republic of)
Monaco
Mongolia
Montenegro
Montserrat
Morocco
Mozambique
Myanmar
Namibia
Nauru
Netherlands
Netherlands Antilles
New Caledonia
New Zealand
Nicaragua
Niger
Nigeria
Niue
Norfolk Island
Northern Mariana Islands
Norway
Oman
Pakistan
Palau
Palestinian Territory, Occupied
Panama
Papua New Guinea
Paraguay
Peru
Philippines
Pitcairn
Poland
Portugal
Puerto Rico
Qatar
Romania
Russian Federation
Rwanda
Réunion
Saint Barthélemy
Saint Helena
Saint Kitts And Nevis
Saint Lucia
Saint Martin
Saint Pierre And Miquelon
Saint Vincent And The Grenedines
Samoa
San Marino
Sao Tome and Principe
Saudi Arabia
Senegal
Serbia
Seychelles
Sierra Leone
Singapore
Slovakia
Slovenia
Solomon Islands
Somalia
South Africa
South Georgia and the South Sandwich Islands
Spain
Sri Lanka
Sudan
Suriname
Svalbard And Jan Mayen
Swaziland
Sweden
Switzerland
Syrian Arab Republic
Taiwan, Province Of China
Tajikistan
Tanzania, United Republic of
Thailand
The Federal Democratic Republic of Nepal
Timor-Leste
Togo
Tokelau
Tonga
Trinidad and Tobago
Tunisia
Turkey
Turkmenistan
Turks and Caicos Islands
Tuvalu
Uganda
Ukraine
United Arab Emirates
United Kingdom
United States
United States Minor Outlying Islands
Uruguay
Uzbekistan
Vanuatu
Venezuela
Viet Nam
Virgin Islands, British
Virgin Islands, U.S.
Wallis and Futuna
Western Sahara
Yemen
Zambia
Zimbabwe
Åland Islands
Postal Code (Required)
Mobile Telephone Number
8qlef4m7hbyo
Home Telephone Number
Work Telephone Number
Other Contact Information
Attendee 2
Prefix
Mr.
Mrs.
Ms.
Dr.
Prefix
First Name
Middle
Last Name
Suffix
Date of Birth
Month
January
February
March
April
May
June
July
August
September
October
November
December
Month
/
Day
1
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19
20
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22
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25
26
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28
29
30
31
Day
/
Year
Relationship to Barth Individual
Relationship to Barth Individual
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BTHS Individual
Spouse
Child of BTHS Individual
Parent/Guardian
Sibling
Grandparent
Aunt/Uncle
Cousin
Friend
Other
Gender
Gender
-----
Male
Female
Attendee 3
Prefix
Mr.
Mrs.
Ms.
Dr.
Prefix
First Name
Middle
Last Name
Suffix
Date of Birth
Month
January
February
March
April
May
June
July
August
September
October
November
December
Month
/
Day
1
2
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31
Day
/
Year
Relationship to Barth Individual
Relationship to Barth Individual
-----
BTHS Individual
Spouse
Child of BTHS Individual
Parent/ Guardian
Sibling
Grandparent
Aunt/ Uncle
Cousin
Friend
Other
Gender
Gender
-----
Male
Female
Attendee 4
Prefix
Mr.
Mrs.
Ms.
Dr.
Prefix
First Name
Middle
Last Name
Suffix
Date of Birth
Month
January
February
March
April
May
June
July
August
September
October
November
December
Month
/
Day
1
2
3
4
5
6
7
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10
11
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13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
30
31
Day
/
Year
Relationship to Barth Individual
Relationship to Barth Individual
-----
BTHS Individual
Spouse
Child of BTHS Individual
Parent/ Guardian
Sibling
Grandparent
Aunt/ Uncle
Cousin
Friend
Other
Gender
Gender
-----
Male
Female
Attendee 5
Prefix
Mr.
Mrs.
Ms.
Dr.
Prefix
First Name
Middle
Last Name
Suffix
Date of Birth
Month
January
February
March
April
May
June
July
August
September
October
November
December
Month
/
Day
1
2
3
4
5
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20
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24
25
26
27
28
29
30
31
Day
/
Year
Relationship to Barth Individual
Relationship to Barth Individual
-----
Barth Individual
Spouse
Child of BTHS Individual
Parent/ Guardian
Sibling
Grandparent
Aunt/ Uncle
Cousin
Friend
Other
Gender
Gender
-----
Male
Female
Attendee 6
Name
Prefix
Mr.
Mrs.
Ms.
Dr.
Prefix
First Name
Middle
Last Name
Suffix
Date of Birth
Month
January
February
March
April
May
June
July
August
September
October
November
December
Month
/
Day
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
30
31
Day
/
Year
Relationship to Barth Individual
Relationship to Barth Individual
-----
BTHS Individual
Spouse
Child of BTHS individual
Parent/ Grandparent
Sibling
Aunt/ Uncle
Cousin
Friend
Other
Gender
Gender
-----
Male
Female
Additional Attendees
Please Provide name, date of birth, relationship and gender of additional attendee(s) below
Defibrillator
Will you be traveling with a defibrillator?
Defibrillator
-----
Yes
No
Unsure
Dietary Restrictions
Dietary Restrictions (i.e., kosher, vegetarian, allergies, etc.)
Special Needs
Special Needs (i.e., wheelchair accessibility, hearing impaired, etc.)
Photo Consent
We will be taking pictures and videos during the conference to include in future newsletters, on our website, and in literature promoting our mission. Do you give consent to use these photos?
Yes
No
Unsure
Parking
Will you be driving a vehicle to the conference for which parking will be required?
Yes
No
Unsure
This is intended for hotel information only and not as a guarantee of free parking
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