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 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 this program, 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.

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.

2023 Rare Calendar

2023 Program Recap

This year, the #RareAware campaign theme was Pregnancy and Parenthood. The campaign focused on improving the patient experience, removing barriers to access and care, and expanding on the need for more patient engagement in research protocols for pregnancies and parents in the rare liver community.

2023 Program Highlights

  • Delayed diagnosis, limited treatment options, and inadequate long-term care are significant causes of the high mortality and morbidity rates associated with maternal, neonatal, and pediatric rare liver disease patients.
  • The #RareAware campaign leveraged social media to raise awareness and generate exposure for lesser-known medical conditions. By sharing patient narratives and promoting organizations supporting the community, the campaign captured attention and fostered excitement for advocacy.
  • GLI created a safe space for sharing the needs and concerns for rare liver disease patients by engaging adults’ and children’s voices through three roundtable discussions and four GLI LIVE episodes.

Our Next Steps

  • Continue to raise awareness of rare liver diseases and champion for better access to care through educational resources for patients and clinicians, ongoing outreach programs, and advocacy efforts.

  • Establish partnerships with medical professionals, patient advocacy groups, and community organizations to foster a greater level of knowledge exchange and share best practices in maternal, neonatal, and pediatric care for rare liver disease patients.

  • Utilize research and evidence-based solutions to propel the policy agenda to enhance early detection of pediatric and rare liver diseases and promote continuity of care in maternal health.

2023 Campaign Highlights

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Press Release
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Social Media Analytics




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Pediatric & Rare Roundtables

3 Critical 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.”

Cystic Fibrosis

Approximately 75% of PFIC-2 patients develop fibrosis by age 2. (Cincinnati Children’s Hospital)

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“Most infants with Zellweger syndrome do not survive past the first 6 months of life.” (GARD)


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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Ipsen Logo
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Alexion Pharmaceuticals

Rare Liver Diseases Month Sponsors

Intercept Logo
Ipsen Logo
Alberio Logo
Alexion Pharmaceuticals