Notes from the Community, November 2020

Notes from the Community

Plasminogen Deficiency Foundation Launched
By Rebecca Bialas, MD, Board Chair

On behalf of our Board of Directors, I am pleased to announce the official launch of the Plasminogen Deficiency Foundation, a 501(c)(3) nonprofit dedicated to improving the lives of patients with plasminogen deficiency.

Our website is available at plasminogendeficiency.org or PLGD.org, and you can also find us on Instagram (@PLGDFound) and Facebook (facebook.com/PLGDFound). Please feel free to share this information with patients, healthcare providers, researchers, partner organizations, or other organizations working in the rare disease space.

Our 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 and treatment needs in plasminogen deficiency.

My family has personally received the most state-of-the-art medical care and the most comprehensive support from the doctors and staff at the Hemophilia Treatment Center where our children are treated for plasminogen deficiency. As a parent of children with a rare disease, I appreciate how our HTC helps to fit this diagnosis into our life as a whole, with child life specialists, school counselors, pediatric infusion nurses, social workers, and even insurance coordinators on staff to make it easier for families. And that's not to mention the individualized medical care plan developed for my children, both for their daily maintenance dosing, and for management of illness or planned surgical procedures. I don't hesitate to recommend that all patients seek care at Hemophilia Treatment Centers to benefit from their comprehensive, supportive approach to management of this rare disease; there is no place better suited to do so.

We look forward to getting to work on our mission. Please feel free to email me directly at rebecca.bialas@plgd.org with any questions, comments, or ideas for collaboration!

Also in this Issue…

Notes from Joe
· The Light at the End of the Tunnel

Legal Update
· HHS Continues Its “Regulatory Sprint”

Washington Update

Payer Update
· Payer Update: 35 and Growing!

Alliance Update
· Announcing Our New Board Member
· 2021 Meeting Schedule