Conference on Barth Syndrome and its treatments
Official title: 2024 Scientific and Medical Conference on Barth Syndrome: Benchtop to Treatments
Funded at Barth Syndrome Foundation · NIH-10994387 · Data updated 2026-11-12
This conference is all about Barth syndrome, a rare condition mostly affecting boys, and it's a chance for doctors, researchers, and families to come together to share the latest ideas and treatments that could help improve health and well-being for those living with this condition.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Barth Syndrome Foundation NIH-funded |
| Lab location | 1 site (Larchmont, United States) |
| Project start | August 1, 2024 |
| Project end | July 31, 2025 |
| Funding year | 2024 |
| Award (this year) | $40,000 |
| NIH project number | 1R13HL175872-01 |
| Project ID | NIH-10994387 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for participation are individuals diagnosed with Barth syndrome and their families, as well as healthcare professionals involved in their care.
✕Less likely to help
Patients with conditions unrelated to Barth syndrome or those who do not have a genetic component may not benefit from this research.
What this research studies
This conference focuses on Barth syndrome, a rare genetic disease affecting primarily males, which can lead to serious health issues like cardiomyopathy and growth delays. It aims to bring together healthcare providers, researchers, and families to discuss advancements in treatment and potential therapies. The event will feature presentations on recent findings, including gene therapy approaches and existing treatments, fostering collaboration among stakeholders to improve patient outcomes.
Why it matters
Potential benefit: If successful, this conference could lead to new treatment options and improved care strategies for patients with Barth syndrome.
How similar studies have gone: Previous conferences have successfully led to advancements in treatment approaches for Barth syndrome, indicating a positive trend in collaborative efforts.
Where this research is happening
-
Barth Syndrome Foundation
Larchmont, United States Active
Researchers
- Principal investigator: Greenberg, Miriam L — Barth Syndrome Foundation
- Study coordinator: Greenberg, Miriam L
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.