Scientific, Medical & Family Conference

International Scientific, Medical & Family Conference

July 16-21, 2018
Hilton Clearwater Beach Hotel, Clearwater Beach, Florida
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July 18, 2018 (12:00pm EDT)
Externally-led Patient Focused Drug Development Meeting
View PFDD Program

The Barth Syndrome Foundation's (BSF) biennial conferences bring affected families, research scientists, and clinicians together in one place at one time for a dual track meeting. BSF and our affiliates in Canada, France, Italy, and the United Kingdom firmly believe that while each of these groups can make some progress in their individual efforts, together, we are so much more powerful.

Doctors who might care for a single patient will have the opportunity to see well over 50 at once, gaining a greater understanding of the breadth of the disorder. Additionally, they will be able to compare notes with other physicians and also to hear from scientific experts about the latest discoveries that shed light on the scientific underpinnings of the disorder.

Scientists will hear presentations on colleagues' recent work, as well as learn from and have a chance to collaborate with experts in other fields. Furthermore, they will gain insight into the clinical aspects of the disorder and witness the medical ramifications of what they discover in the laboratory.

Families have a unique opportunity to be seen by the world´s greatest experts in Barth syndrome, contributing directly to the search for a cure by providing their information, their health history and even their own tissue as well as to learn from experts and from each other so that they can better advocate for their child(ren).

Externally-Led Patient Focused Drug Development Meeting for Barth Syndrome

Barth syndrome (BTHS) individuals and their families had a unique opportunity to have their voices heard by the US Food and Drug Administration (FDA) on Wednesday, July 18th, in Clearwater Beach, Florida, from 12 - 5PM EDT. This meeting was designed to educate the Barth Syndrome Foundation researchers and FDA, whose representatives were present both in-person and via the live webcast, to accelerate the development and approval of life-changing therapies for people affected by BTHS.

Scientific & Medical Session Presentations

July 19, 2018 - Clearwater Beach, FL

Pathomechanisms of Barth Syndrome
Chair—Arnold W. Strauss, MD, Cincinnati Children's Research Foundation, Cincinnati, OH

Potential Therapies for Barth Syndrome
Chair—W. Todd Cade, PT, PhD, Washington University School of Medicine, St. Louis, MO

July 20, 2018 - Clearwater Beach, FL

Clinical Characteristics of Barth Syndrome
Chair—Grant M. Hatch, PhD, University of Manitoba, Winnipeg, Canada

Cardiolipin and Barth Syndrome
Chair—Michael Schlame, MD, New York University School of Medicine, New York, NY

Family Session Presentations

July 19, 2018 - Clearwater Beach, FL

Cardiac Aspects of Barth Syndrome

Clinical Research Updates and Their Impact on Treatment

Potential Therapies for Barth Syndrome

July 20, 2018 - Clearwater Beach, FL

Neutropenia and Barth Syndrome

Living With Barth Syndrome

July 21, 2018 - Clearwater Beach, FL

Growing Friends and Funds

"...The biennial meetings of which I was privileged to attend the first three have become very popular, attracting many affected families, medical specialists and scientists, all interested in Barth syndrome. ..." ~ Peter G. Barth, Emeritus Professor of Congenital Diseases of the Nervous System, Emma Children’s Hospital, University of Amsterdam, the Netherlands

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