LGDA is thrilled to share that the International Patient Registry for Lymphatic Malformations (LMs) will be relaunching in 2026 on the National Organization for Rare Disorders (NORD)’s IAMRARE® platform. This next chapter of our registry is designed to strengthen research, advocacy, and community impact.
Why Are We Changing?
As part of our evolving identity, we are committed to supporting all those navigating lymphatic malformations (LMs), including both Complex Lymphatic Anomalies (CLAs) and isolated LMs.
The new LM Patient Registry builds on the foundation of our first registry for Complex Lymphatic Anomalies (CLAs). Since launching that effort, the LGDA has learned a great deal about what makes registries most valuable for patients, families, and researchers.
With that knowledge, we are introducing important improvements to make the Registry more useful, user-friendly, and impactful. Most importantly, the new registry will be hosted on NORD’s IAMRARE® platform: designed specifically for rare diseases. IAMRARE allows us to collect data in ways that directly inform research, influence treatment protocols, and strengthen advocacy.
Why is a Registry Important?
The registry is a powerful resource for the LM community. By contributing, patients, families, and caregivers will directly shape the future of LM research and care. The information entered will be used by scientists and clinicians to guide research priorities, inform treatment protocols, and strengthen advocacy efforts that reflect the real needs of the community. The information you share will:
- Identify patterns and trends in lymphatic malformations
- Guide research priorities and accelerate scientific discoveries Improve treatment protocols and standards of care
- Strengthen advocacy efforts to expand resources and support for families
Participation is voluntary, confidential, and impactful. Every contribution adds to the knowledge base that moves our understanding of LMs and CLAs forward.
What Happens Next?
The new registry will launch in 2026, and we’ll be sharing updates along the way. Here’s what to expect:
- For current registry participants: Make sure your contact information is up to date to receive updates on transferring your account as we approach the launch in 2026. Your past contributions will remain part of the registry’s history while aligning with new standards. Log into the registry.
- For everyone: Our current registry is no longer accepting new enrollments. We’ll continue to share information and answer questions closer to launch.
In the meantime, you can always reach us at registry@lgdalliance.org with questions or concerns.
Together, we can continue building the knowledge that will lead to better treatments, stronger advocacy, and a brighter future for everyone affected by Lymphatic Malformations.
