Global Liver Institute
Rare Liver Diseases Month
GLOBAL LIVER INSTITUTE
Rare Liver Diseases Month Overview
Toolkit
Videos
Resources
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.
About
#RareAware
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. The 2025 campaign will focus on capturing the experience of living with a rare liver disease in rural communities. Under the theme Rare and Rural, we aim to fuel curiosity, inspire action, and drive greater research efforts to address the unique challenges faced by rare liver disease patients in these underserved areas.
2025 Goals
- Deliver rare liver disease education to medical schools in rural communities in the US.
- Engage 30+ students in underserved areas in hands-on research and advocacy about the impact of rare liver diseases on their communities.
- Share the stories of 10+ rare disease patients from rural areas, amplifying their experiences and raising awareness.
- Build and share a comprehensive list of support and educational resources for rare disease patients in rural communities.
- Lead in-person advocacy efforts, using patient data and research to drive policy changes for rural healthcare.
NEW Rural Resources:
Access to care shouldn’t depend on where you live. Visit our Resources Page to find newly added resources, support, and tools designed to help patients in rural communities. Check it out today!
Listen to the “Rare and Rural Access to Care and Research” episode of If Your Liver Healthy? podcast
Many people with rare liver diseases in rural areas struggle to find a convenient hepatologist – and joining cutting-edge clinical trials can be even harder to access.
Learn more about the challenges, why this is important, and some of the solutions in the most recent episode of “Is Your Liver Healthy?” featuring guests: Harsha K. Rajasimha, PhD, Caregiver & founder of IndoUS Rare; Cecilia Dueñas, Founder of PBC Research Foundation; Kristin Hatcher, rare liver disease patient in a rural area and Pediatric and rare liver diseases program director at GLI; Teresa Davidson, LAN Member (Mid South Liver Alliance) serving a very rural population.
🎥 Watch on YouTube, Spotify Apple Music, iHeart, Deezer, Libsyn
2024 Achievements
- Successfully organized Empowerment Day: a virtual session guiding children ages 5-13 to overcome their fears of discussing their disease and providing a platform for them to share their stories with peers.
- Hosted four episodes of GLI LIVE, featuring patients as experts on transitions over seven different rare liver diseases.
- Developed a social media toolkit with 15+ sharable educational graphics about various rare diseases to increase awareness.
- Advocated for bills and legislation like the Medical Nutrition Equity Act on Capitol Hill
2024 Campaign Highlights
Press Release
Potential Reach
Over 3.7 Billion
Social Media Analytics
~ 500,000 Impressions
Over 33 countries Reached
Statistics
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. (OrganDonor.gov, 2020)
For more information, please contact the GLI Pediatric and Rare Liver Diseases Team at
pedsrare@globalliver.org
Rare Liver Diseases Month Sponsors
