The STXBP1 Foundation is a non-profit parent organization dedicated to ending STXBP1-related disorders. We are comprised of a diverse team of families and their supports, scientists and medical professionals. In fostering partnerships with physicians, researchers, and other foundations, we share learnings and efficiencies to increase awareness of this rare, genetic disorder and accelerate the time to finding a cure. We believe that through our work, we are leading the charge towards improved therapies and ultimately ending STXBP1-related disordesr. Our International STXBP1 Family has grown tremendously to 1000+ united and strong and we will only continue to grow our numbers as other families have access to genetic testing. Our Mission: -Create awareness in the disorders associated with STXBP1 mutations -Fund Research to accelerate discovery of a cure -Provide families with tools to help them understand the disease & how to get involved -Advocate to improve early detection -Foster activism to help change policies in favor of orphaned diseases -Improve the lives of our STXBP1 Family
| Website | http://stxbp1disorders.org |
| Employees | 8 (3 on RocketReach) |
| Founded | 2017 |
| Address | 2001 Hamilton St, Philadelphia, Pennsylvania, US |
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| Industry | Hospitals and Health Care |
| Keywords | Nonprofit Organization, Rare Disease Research, Family Support Network, Syndrome Research, Genetic Disorder Support, Patient Advocacy Group, Rare Disease Advocacy, Pediatric Neurology, Medical Research Foundation, Disability Support, Medical Research Funding, Child Neurology, Epilepsy Research, Intellectual Disability, Seizure Disorder, Clinical Trials |
| Competitors | The National Institutes of Health, Epilepsy Foundation, National Organization for Rare Disorders, Parent Project Muscular Dystrophy, CureDuchenne, Foundation for Angelman Syndrome Therapeutics, Prader-Willi Syndrome Association | USA, SMA Foundation, Cure Rare Disease, NATIONAL TUBEROUS SCLEROSIS ASSOCIATION +37 more (view full list) |
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STXBP1 Foundation Questions
Russ Novy is the Co-Founder and Board of Directors, Marketing and Brand of STXBP1 Foundation.
3 people are employed at STXBP1 Foundation.
STXBP1 Foundation is based in Philadelphia, Pennsylvania.
Top STXBP1 Foundation Employees
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35+
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James Goss
Scientific Director at STXBP1 Foundation
Pittsburgh, PA, US12 -
Mark Quinlan
Executive Director at STXBP1 Foundation
Eugene, OR, US21
