Our Stories:
Sharing inspiration, challenges, empathy, and hope. If you would like to submit your story about your experience with PLGD, please email us at contact@plgd.org
Community
Events:
PLGD Patient Roundtable, November 6, 2026, in Orlando, FL
This year’s PLGD Patient Roundtable will be held in conjunction with Hope Charities’ 2026 Hope Conference in Orlando, FL from November 5-7, 2026. We hope you can join us! Register for the conference here! Both virtual and in person registration is offered.
NBDF’s Bleeding Disorders Conference, 2027: Coming Soon
Virtual Community Engagement Sessions for Patients and their Families
These community sessions on Zoom for patients and their families are intended as a way to gather together with other members of the PLGD community, in a discussion facilitated by members of the PLGD Foundation board. Some sessions are specific themes and some are more general discussion forums. This is a great place to start for new families who may have questions and want to get to know other families in the community! It’s also a great way for existing members to stay connected. Everyone is welcome!
Link to join all sessions: PLGD Community Zoom
Upcoming Session:
September 13, 2026, 7pm EST: Treatment Reality: Ryplazim and Beyond
October 15, 2026, 8pm EST: Emotional Check In Night: Real Talk about PLGD
ANNUAL EVENTS:
Rare Disease Day, February 28, 2026
Find in-person and live events here when they are announced.
Plasminogen Deficiency Awareness Day, May 4th
Stay tuned here, and subscribe to our newsletter, for more details about the events each May.
Patient Ambassador Program
Sometimes the most helpful thing for a family with a new diagnosis of Plasminogen Deficiency is to know that you are not alone, and to connect with someone else who has been in your shoes. Our Patient Ambassador Program pairs new PLGD families with existing families to serve as a point of contact and communication, for questions and generally sharing experiences.
How to Request a Patient Ambassador:
- Become a Member of our Patient Portal
- Join the Discussion Board for the Ambassador Program. You can post a few details about yourself, and a PLGD Patient Ambassador will reach out to you directly!
*Please note, an Ambassador should not take the place of a medical provider.
Where in the World are PLGD Patients:
Add your location to our Community Map! Note: No identifying information is linked to your location.
Virtual Community
Plasminogen deficiency is a rare disease, but you are not alone. PLGD patients can be found all over the world. Join our virtual community in any of the following ways:
Plasminogen Deficiency and Ligneous Conjunctivitis Support Group on Facebook:
