Our Mission:
We are a non-profit organization dedicated to supporting PLGD patients and their families. We provide education and community, and we work to support research for better treatments, and better lives.
News and Updates
What We’re Working On…
- Together with the National Hemophilia Foundation (NHF), we’re working with bleeding disorder experts from around the country to develop research goals for the next 10 years in the rare bleeding disorder community. Recommendations will be presented at the State of the Science Research Summit, September 12-15, 2021. Stay tuned!
- Educating providers who are most likely to diagnose PLGD is a major goal of our foundation; Dr. Rebecca Bialas presented a PLGD case study to the faculty and residents of the Duke Ophthalmology Department in May 2021.
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We’re working with the American Thrombosis and Hemostasis Network (ATHN) and the CDC to increase data collection on PLGD patients’ experiences and outcomes.
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We’re developing educational materials for healthcare providers to more easily recognize and diagnose PLGD
Our Partners
