Global Liver Institute

Rare Liver Diseases Month


Rare Liver Diseases Month
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Rare Liver Diseases Month Overview

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Rare Liver Diseases Month

Annually in February, Rare Liver Diseases Month elevates the voices within the rare liver disease community and equips advocates with the tools to make a positive difference in their communities.

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Rare Liver Diseases Month is an all-inclusive, collaborative campaign that aims to promote awareness and education about a diverse range of rare liver diseases through discussions on health policies, education, and advocacy. Through the #RareAware campaign, GLI strives to streamline the rare patient experience by addressing barriers and challenges to patient access and care from the perspective of patients, families, and providers, even when these issues lie beyond the patients’ direct control. This year’s focus is Transitions in Care. We aim to empower stakeholders to use their rare voice to have meaningful conversations about their care surrounding transitions from pediatric care to adulthood, outpatient care transitions, and post-transplantation care.

2024 Goals

  • Introduce Empowerment Day, a virtual seminar  connecting individuals who have successfully navigated care transitions with those currently undergoing similar journeys. 
  • Raise awareness on over 15 rare liver diseases.
  • Develop resources that aid patients through their healthcare transition journey.
  • Share answers to frequently asked questions on best practices, latest updates, and more from experts in the field.
  • Hear from patients and caregivers as they share their journey on weekly episodes of GLI LIVE.

      2023 Achievements

        • Established new partnerships to identify and address gaps in maternal, neonatal, and pediatric care for rare liver disease patients to discuss challenges and advocate for effective solutions.
        • Hosted 3 Pediatric and Rare Roundtables, bringing together the perspectives of patients, caregivers, and patient advocates.  
        • Released 3 educational resources, with a focus on cholestatic pruritus and rare liver diseases during pregnancy.
        • Showcased 4 episodes of GLI LIVE, featuring experts in the field.

      2023 Campaign Highlights

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      Press Release
      Potential Reach

      Over 3.5 Billion

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      Social Media Analytics

      421,871 Impressions 

      181,394 Reach 

      7,100 Engagements

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      Pediatric & Rare Roundtables

      3 key Conversations


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      As reported by Global Genes, “50% of people with rare diseases are children.”


      According to Global Genes, “95% of rare diseases do not have FDA approved medications.”


      Currently 2,000 children under the age of 18 are awaiting a liver transplant in the United States. (, 2020)

      For more information, please contact the GLI Pediatric and Rare Liver Diseases Team at

      Rare Liver Diseases Month Sponsors

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      Rare Liver Diseases Month Sponsors

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      Ipsen Logo
      Alberio Logo
      Alexion Pharmaceuticals