Global Liver Institute

Rare Liver Diseases Month


Rare Liver Diseases Month
Icon Overview Whitebg1

Rare Liver Diseases Month Overview

Call To Action White Icon


Online Video White Icon


Resources White Icon



Rareaware 01

Rare Liver Disease Month is an all-inclusive, collaborative campaign that aims to promote awareness and educate the general public about a diverse range of rare liver diseases through insightful discussions on health policies, education, and advocacy. Occurring annually in February, Rare Liver Disease Month elevates the voices within the rare liver disease community and equips rare advocates with the tools to make a positive difference in their communities. 

As a result of a lack of attention paid to rare liver diseases in public health discussions and discussions between medical providers, patients often suffer from delayed diagnosis, inadequate support, and inhibited access to treatment for these diseases. Thus, GLI aims to streamline the rare patient experience and mitigate the presence of barriers and challenges to patient access and care from a patient, family, provider perspective, addressing issues not directly under the control of the patients. 

As one of the very few rare liver disease advocacy initiatives, this program involves all age groups (including underrepresented children and adolescents), promotes health equity, and facilitates communication between industry, policymakers, clinicians, researchers, and regulators to improve care for patients. This month will focus on liver diseases of pregnancy, pregnancy in rare liver diseases, and parenthood. As part of this ambitious campaign, we are introducing weekly themes, accompanied by programs that highlight the perspectives of pregnant people and parents about the realities of pregnancy and parenthood, equity in medicine for parents and pregnant people, care for mothers and parents, and policy & advocacy in healthcare. 

2023 Rare Calendar

GLI LIVE Episodes

conversations Originally launched as part of our COVID-19 response, GLI LIVE features president & CEO, Donna Cryer, in weekly conversations on Wednesdays at noon ET. Throughout February, GLI LIVE episodes will feature conversations with patients, physicians, and other experts to educate the public on areas of concern regarding rare liver diseases and maternal/neonatal health. Episodes streamed live on GLI’s Facebook, LinkedIn, and YouTube accounts. Recordings are available on GLI’s YouTube channel.

Rare Liver Diseases Month Roundtables

As part of Rare Liver Diseases Month, GLI will convene expert panels to discuss challenges that rare liver diseases pose to maternal, pediatric, and neonatal health. Discussions throughout the month will focus upon the following topics: patient-driven advocacy, provider perspectives on patient access, needed systemic support of the critical role of caregivers, and a preliminary assessment of the needs and emerging solutions for maternal and neonatal health.

Extraordinary Young People

For last year’s Rare Liver Disease Month, GLI initiated the first Rare Storytime that included pediatric patients and their voices in the conversation for change in the rare community. GLI worked with authors Kara and Evren Ayik to read Extraordinary: A Book for Children with Rare Diseases and led multiple discussions about the pediatric rare liver disease experience. As a part of this year’s campaign, GLI plans to bring back Rare Storytime, facilitating new conversations about transitional care from pediatric to adult healthcare. Our past attendees Kara and Evren Ayik will rejoin us in this session to share their thoughts and lessons learned for the younger kids out there who seek guidance in the pediatric rare liver journey.


Liver (1)

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)

Beyond The Biopsy White Icon

“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

Intercept Logo
Ipsen Logo
Alberio Logo
Alexion Pharmaceuticals

Rare Liver Diseases Month Sponsors

Intercept Logo
Ipsen Logo
Alberio Logo
Alexion Pharmaceuticals