Barth Syndrome Foundation
Our mission is saving lives through education, advances in treatment, and finding a cure for Barth syndrome.
Diseases Supported
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 ServicesTherapy & Counseling
Professional Counseling Crisis Intervention Grief CounselingMedical Referrals
Medical Care Clinical or Treatment Centers Rehabilitation Services Respite Care Genetic Testing Genetic CounselingLegal Advice
Workplace Issues Malpractice Help with Adoption or PlacementFinancial Assistance
Medical Care Transportation Assistive devices Insurance Scholarships Home ModificationsResearch
Referrals to Research Studies Registry of affected individuals Blood and Tissue Sample StorageEducation & Training
Telephone Helpline E-mail List Training Speakers Bureau Advocacy TrainingOther
Pen pal Program Summer CampResources
Disease resources include educational and informational materials that can be tagged to appear on specific disease pages.
Barath Syndrome Journal
Newsletter published twice a year.
Overview of Barth syndrome
Overview of Barth syndrome
How to Diagnose
How to diagnose Barth syndrome
Showing 3 of 5 resources.
Upcoming Events
Conference: Scientific, Medical & Family Conference
One meeting brings together doctors and scientists involved in the many aspects of the disorder to discuss the latest underlying scientific developments and clinical insights; it is a unique experience that encourages collaboration and accelerates advances in understanding and treatment. The other is a family meeting in which the latest information is discussed with families. Free consultation sessions are also held, enabling families to meet with medical experts from around the world.
Showing 1 of 1 events.