LE&RN Global Registry for Lymphatic Diseases

There is an urgent need for data on lymphatic diseases (LDs).

Your experiences hold the key to unlocking breakthroughs in research, treatments, and ultimately a cure.


The mission of the LE&RN Global Registry for Lymphatic Diseases is to establish the world's most comprehensive patient-centered registry to inspire ground-breaking research, expedite the development of treatment options, and establish a path leading to the cure for LDs.

Who Can Join?

Everyone living with LDs, including primary and secondary lymphedema (LE), lipedema, and lymphatic anomalies, is welcome to join. Parents or guardians can also grant permission for their children to enroll.

How to Join Today

Signing up is easy and secure. Begin with our "Initial Contact Survey," taking 5-10 minutes. From there, explore our more detailed questionnaire tailored to your diagnosis. You have the flexibility to save your progress and return at your convenience.

Knowledge is power!

By taking the time today to enroll, you can empower our researchers to find cures for lymphatic disease tomorrow.

If you enrolled in the previous International Lymphatic Disease Patient Registry and Biorepository before July 1, 2023 you will be automatically included in the new Global Registry for Lymphatic Diseases. If you enrolled after July 1, 2023, please re-enroll.

If you have any questions, please email Registry@lymphaticnetwork.org


  • Learn the signs and symptoms that people living with LDs experience
  • Understand the barriers to diagnosis and access to care
  • Identify opportunities to improve symptom management
  • Evaluate quality-of-life impact
  • Innovate treatment options
  • Connect people living with LDs with opportunities to participate in research studies, surveys, and clinical trials
  • Follow people living with LDs over time to gain insights into the progression of LDs
  • Link and integrate the LE&RN registry to the LE&RN repository and/or other biobanks and repositories
  • Encourage collaboration and networking among researchers to expedite advancements