Global Liver Institute
Rare Liver Diseases Month
GLOBAL LIVER INSTITUTE
As part of our mission to improve the lives of individuals and families impacted by liver disease, Global Liver Institute (GLI) led the second annual Rare Liver Diseases Month in February 2022. Our month-long #RareAware campaign featured communication, education, and advocacy efforts throughout the month, focused solely on rare liver diseases.
The campaign name, #RareAware, highlighted the need to promote awareness and educate the general public about the diverse range of rare liver diseases. Though there are over 100 liver diseases, the majority are often overshadowed by the few more common ones . As a result, even many medical professionals lack a basic knowledge of rare liver diseases.
In addition to the physical, psychosocial, and financial challenges associated with any liver disease, a rare liver disease patient can face additional burdens such as a lengthy, often invasive diagnosis and, if even available, costly treatments. The need to travel a formidable distance to see a hepatologist in their specialty area may introduce an additional financial burden. Thus, the #RareAware campaign attempted to draw attention and resources to remediate these significant problems. It involved all age groups, pushed for health equity, and facilitated communication between patients and the healthcare industry to improve care.
During the month of February, we hosted and featured various new patient-centric activities, such as GLI LIVE, Pediatric Rare Storytime/Chat, and GLI Living.
These events not only allowed us to spread awareness about rare liver diseases, but also provided an opportunity for rare liver disease patients to discuss or share their own experiences and challenges. These activities amplified the voices of the rare liver disease community as well as facilitated communication and profound discussions regarding rare liver diseases.
Donna R. Cryer, JD
President and CEO
Global Liver Institute
“As someone who has lived with the ongoing challenges of an autoimmune liver disease for over 30 years, it is of personal significance to me for GLI to once again present a high-impact, month-long campaign that will continue to draw much needed attention and bring transformative change to the rare liver disease community. As the convener of the largest alliance of organizations devoted to addressing the challenges of pediatric and rare liver disease patients, GLI is deeply committed to addressing unmet needs and collaborating with our Pediatric and Rare Liver Diseases Council Members and partners to spur policy changes and design comprehensive, creative, and thoughtful solutions to issues faced on a daily basis – often for yearson end – by our rare liver patients and their caregivers and support systems.”
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.”
Approximately 75% of PFIC-2 patients develop fibrosis by age 2. (Cincinnati Children’s Hospital)
“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. (OrganDonor.gov, 2020)
GLI LIVE Episodes
Launched as part of our COVID-19 response, GLI’s President & CEO, Donna Cryer, converses weekly with guests on GLI LIVE on Wednesdays at noon ET. Throughout February, GLI Live episodes featured conversations with patients and physicians to educate the public on areas of concern regarding rare liver diseases. Episodes streamed live GLI’s Twitter, Facebook and YouTube accounts. Episode recordings are available on GLI’s YouTube page.
GLI Living was a series of sessions that took place every Tuesday at noon ET throughout Rare Liver Diseases month. Throughout these sessions, we discussed with rare liver disease patients what it is like to live with a rare liver disease and how we can improve quality of life – whether it be through emotional, psychological, or physical self-care – with pediatric and rare liver disease patients. These sessions allowed us to provide a voice to the underrepresented rare liver disease community members, to share, to connect and to learn. In addition, by having a discussion about these topics and issues, it allowed us to concentrate on the difficulties that rare liver disease patients encounter and spread awareness about rare liver diseases.
Extraordinary Young People
Throughout the month, GLI hosted four pediatric rare storytime events as part of our effort to educate the general public about rare liver diseases. In addition, the full month of storytimes/chats provided an opportunity for all ages of young people to engage. Each Saturday was geared towards a different age group affected by rare liver diseases and incorporated age-appropriate discussion topics. During this event, Authors Kara and Evren Ayik read their book Extraordinary: A Book for Children with Rare Diseases. This not only contributed to our advocacy efforts, but it also was vital in opening a discussion about patients’ experiences, specifically those of children whose voices may not be heard otherwise.