Your generosity and support now will help make it possible for us to accomplish the following critical objectives in 2023:

  • Host our 5th International Symposium in Washington, D.C. in July 2023 to bring patients, families and researchers together.
  • Continue to build our global research network and fund critical research.
  • Raise awareness and shorten the time for diagnosis by publishing our registry data.
  • Support patients and families as they meet the challenges of living and thriving with chronic illness.
  • And so much more.

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