Barth Syndrome Foundation
BSF Grant Agreement Update
This project will allow us to make grants to small biotechs
Posted April 11, 2025
Work & Deliverables
We have a grants agreement that we need to amend. It is geared towards academic researchers but we need a version for small biotechs such that both their and our interests are protected.
Barth Syndrome Foundation
Our Mission Saving lives through education, advances in treatments, and finding a cure for Barth syndrome. Our Vision A world in which Barth syndrome no longer causes suffering or loss of life. Our Goals To ensure that everyone with Barth syndrome is quickly and accurately diagnosed. To ensure that all diagnosed families actively participate in the Barth Syndrome Registry and Repository. To encourage, guide, and fund additional research to improve understanding, diagnosis, and treatment, and ultimately to develop a cure for Barth syndrome. To communicate information about effective treatments of Barth syndrome to all attending physicians. To grow and strengthen our caring and informed community of Barth families actively involved in supporting each other and our organization. To build the expanding base of committed contributors who will provide the funds we need to achieve our vision. To inspire, support, and be good stewards of the time and talents of the growing number of volunteers and staff dedicated to our vision.
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Barth Syndrome Foundation
Our Mission Saving lives through education, advances in treatments, and finding a cure for Barth syndrome. Our Vision A world in which Barth syndrome no longer causes suffering or loss of life. Our Goals To ensure that everyone with Barth syndrome is quickly and accurately diagnosed. To ensure that all diagnosed families actively participate in the Barth Syndrome Registry and Repository. To encourage, guide, and fund additional research to improve understanding, diagnosis, and treatment, and ultimately to develop a cure for Barth syndrome. To communicate information about effective treatments of Barth syndrome to all attending physicians. To grow and strengthen our caring and informed community of Barth families actively involved in supporting each other and our organization. To build the expanding base of committed contributors who will provide the funds we need to achieve our vision. To inspire, support, and be good stewards of the time and talents of the growing number of volunteers and staff dedicated to our vision.