About the Foundation

Our Mission

The Plasminogen Deficiency Foundation is a 501(c)(3) nonprofit whose mission is to advance the care and treatment of patients with plasminogen deficiency (PLGD) by promoting public awareness of the disease through education and advocacy, creating a community for those affected by PLGD, and supporting research to address the current knowledge gaps in plasminogen deficiency and support development of sustainable treatments.

Our Board of Directors

Rebecca Bialas, MD

Ryan Bialas, MD

Sarah Bein, MD

Amy Shapiro, MD

Chris Howell, MD

Our Focus

Education

Provide accessible, accurate, up-to-date information for patients, families, and their healthcare providers via our website and social media presence.

Develop educational materials and resources for healthcare providers to recognize and diagnose PLGD sooner, and direct patients into comprehensive care centers.

Advocacy

Work with government agencies, pharmaceutical companies, and other patient organizations, on behalf of PLGD patients, to allocate resources to the ongoing study of the disorder.

Support legislation to protect PLGD and other rare disease patients. Be a voice for the PLGD community.

Support patients in travel to seek care and obtain medication and supplies.

Community

Create a space for patients and families to come together and support each other.

Engage with fellow PLGD patients and supporters on social media.

Share our stories with other patients and with the world.

Research

Support and facilitate research to address the current knowledge gaps in PLGD such as natural history, triggers of disease manifestations, and development of severity categories, and the development of specific therapies and novel treatments.

Fund research that aligns with the mission of the foundation, including an eventual cure for PLGD.