Tualatin, OR

Founder and former Executive Director, Alagille Syndrome Alliance

Represented: Patients, Caregivers, and Patient Advocates
Term ended August 2020

Cindy Luxhoj is the Founder and former Executive Director of the Alagille Syndrome Alliance (ALGSA), the only nonprofit organization in the world focused on Alagille Syndrome (ALGS), a rare genetic disease affecting fewer than one in 70,000 individuals worldwide. Luxhoj has served PCORI in the past, acting as a merit reviewer for Communication and Dissemination Research proposals, and currently acts as Co-Chair of the Patient Advocacy Committee of the Childhood Liver Disease Research Network (ChiLDReN). Her only daughter died from complications of ALGS when she was 24 years old. Now, Luxhoj tirelessly carries on her daughter’s legacy of service to the ALGS community, advocating for research, helping build a better life for everyone who suffers from this rare disease, and hoping fervently for a cure.

Conflicts of Interest

As of March 21, 2017

  • National Organization for Rare Diseases, employee of organizational member
  • Childhood Liver Disease Research Network, Patient Advocacy Group Committee, co-chair  

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Panel / Committee