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Barth Syndrome Foundation

Disease Support Organization
Last Updated: Jul 5, 2019 04:29:21 pm
Established: 2000
Area Served: International

Our mission is saving lives through education, advances in treatment, and finding a cure for Barth syndrome.

2005 Palmer Avenue #1033
Larchmont, New York 10538
United States
(855) 662-2784(914) 303-6323
1 address 1 contact
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Staff Speaks: English
Telephone Translation: No (Translation services available for other languages)

Our Organization

Incorporated Nonprofit International Organization 501(c)3 Non-Profit Professional/Medical Board Board of Directors Paid Staff

Our Financials

N/A Funding for Services $1,281,916 Annual Budget $321,967 Funding for Research
Funding Sources: N/A
This organization receives funding from a company that produces a test or treatment for the condition it serves: No
If yes, % of funding from such companies?

Our Membership

200 Membership Size 4 # of Chapters 2,000 Total Number on Mailing List 170 People with Conditions in Your Mailing List

What We Do

Support & Peer Matching
Referrals to Matching Individuals/Families Peer Support Peer-to-peer Counseling Referrals to Local Chapter or Group Patient Navigators Translation Services
Therapy & Counseling
Professional Counseling Crisis Intervention Grief Counseling
Medical Referrals
Medical Care Clinical or Treatment Centers Rehabilitation Services Respite Care Genetic Testing Genetic Counseling
Legal Advice
Workplace Issues Malpractice Help with Adoption or Placement
Financial Assistance
Medical Care Transportation Assistive devices Insurance Scholarships Home Modifications
Research
Referrals to Research Studies Registry of affected individuals Blood and Tissue Sample Storage
Education & Training
Telephone Helpline E-mail List Training Speakers Bureau Advocacy Training
Other
Pen pal Program Summer Camp

Resources

Disease resources include educational and informational materials that can be tagged to appear on specific disease pages.

Voice of the Patient: Barth Syndrome
Added On: Jun 13, 2019
Category: General
Disease(s): Barth syndrome
The Voice of the Patient report is critical for researchers to submit new therapies to the FDA for regulatory approval. It will also inform the clinical trial endpoints that are important to our community.
BSF Beat Newsletter
Added On: Jun 13, 2019
Category: General
Disease(s): Barth syndrome
Published twice yearly
Overview of Barth syndrome
Added On: Jan 14, 2015
Category: General
Disease(s): Barth syndrome • Cardiomyopathy • Dilated Cardiomyopathy • Hypertrophic Cardiomyopathy • Immune Deficiency Disorder • Inborn Errors of Metabolism • Left Ventricular Non-Compaction Cardiomyopathy (LVNC) • Metabolic Diseases • Mitochondrial disorders
Overview of Barth syndrome
Showing 3 of 4 resources.

Upcoming Events

Conference: 10th International Scientific, Medical & Family Conference
When:Jul 20, 2020. Ends on Jul 25, 2020. Multi-day event.
Where:400 Mandalay Ave., Clearwater Beach, Florida 33767
One meeting brings together doctors and scientists involved in the many aspects of Barth syndrome to discuss the latest underlying scientific developments and clinical insights. The other is a family meeting in which the latest information is shared.
URL: https://www.barthsyndrome.org/newsevents/conferenc ...
Phone: 914-303-6323
Diseases: Barth syndrome
Disease Types: Rare Condition or Disease • Genetic, X-linked • Genetic, mitochondrial • Metabolic • Mitochondrial disorder • Heart/Cardiac • Musculoskeletal disorders
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Showing 1 of 1 events.