Today marks an exciting new chapter in our organization's journey.
The Lymphangiomatosis and Gorham's Disease Alliance (LGDA) is now the Lymphatic Malformations Alliance.
While our name is changing, our mission is not.
We remain committed to uniting patients, families, clinicians, and researchers to accelerate understanding, expand access to care, and drive breakthroughs so that no one faces this journey alone.
Why We Changed Our Name
When LGDA was founded by patient advocate Jana Sheets, the goal was simple but powerful: to ensure that no one affected by a complex lymphatic anomaly had to navigate their journey alone.
That commitment has guided everything we have done—from connecting patients and families with trusted information and expert care to advancing research, advocacy, and community.
Over the years, our organization has grown alongside the science. As our programs expanded, we increasingly welcomed individuals and families affected by isolated lymphatic malformations, whose experiences often mirrored those of people living with complex lymphatic anomalies.
While these conditions are distinct, they frequently share underlying biological pathways, multidisciplinary care teams, research priorities, and treatment approaches. Most importantly, the people living with these conditions often face the same challenges: finding knowledgeable specialists, understanding complex medical information, accessing emerging treatments, and connecting with others who truly understand their journey.
It became clear that our name no longer reflected the community we were serving.
A Name That Better Reflects Our Community
The name Lymphatic Malformations Alliance recognizes our commitment to supporting both individuals and families affected by isolated lymphatic malformations and complex lymphatic anomalies.
It also reflects the collaboration that has always been at the heart of our work. Progress happens when patients, families, clinicians, researchers, advocates, and partners come together with a shared purpose.
Our new name better represents that growing community while creating a stronger, more inclusive identity for the future.
What Isn't Changing
Our mission.
Our values.
Our commitment to patients and families.
To everyone who has been part of LGDA's journey—especially those living with complex lymphatic anomalies—please know this:
You remain at the heart of this organization.
This new name does not represent a departure from our roots. It is an evolution that reflects the community we have become and the future we are building together.
We will continue to champion education, advocacy, research, and meaningful connections while working to improve care and accelerate progress for everyone we serve.
Looking Ahead
Every step forward has been made possible because of the patients, caregivers, clinicians, researchers, donors, volunteers, and partners who have believed in this mission.
Thank you for walking this journey with us.
Together, we will continue advancing understanding, expanding access to care, and creating a future where rare should never mean alone.
Welcome to the Lymphatic Malformations Alliance.
