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Patients & Caregivers

Patient Registry

The International LGDA Registry offers hope for improved patient care, disease management, and paves the road to new medicine and treatments. You are empowered to make a difference for those living with your condition and for those of generations to come

You will be asked to provide medical information and be asked some general question. The registry information is shared with scientists and other researchers, while still protecting your privacy. All personal identifiers will not be shared with anyone outside the registry. You might be eligible for a clinical study. A researcher can only contact you through LGDA. The LGDA then will contact you. This protects your privacy.

Things to know about the LGDA Registry:

  • There is no cost to join; the registry is supported by the LGDA.
  • Your privacy will be guarded by encrypting your information and not sharing your name, address, phone number, or any other information that may be used to identify you or your family with other outside of the LGDA.
  • Your information helps us understand Complex Lymphatic Anomalies.
  • You do not have to participate in the registry to be informed about or to participate in research studies or clinical trials.
  • You can change your mind and withdraw from the registry at any time without any explanation.
  • We do ask that you update your profile regularly.

Questions can be sent to

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  • # Patients in Registry