Rare Liver Diseases Month
February

Rare Liver Diseases Month Mission

As part of our mission to improve the lives of individuals and families impacted by liver disease, Global Liver Institute (GLI) is excited to lead the second annual Rare Liver Diseases Month in February 2022. Our month-long #RareAware campaign will feature communication, education, and advocacy efforts throughout the month, focused solely on rare liver diseases.

The campaign name, #RareAware, highlights 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 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 attempts to draw attention and resources to remediate these significant problems. It aims to involve all age groups, push for health equity, and facilitate communication between patients and the healthcare industry to improve care.

During the month of February, we will be hosting and featuring various new patient-centric activities, such as GLI LIVE, Pediatric Rare Storytime/Chat, and GLI Living. These events will not only allow us to spread awareness about rare liver diseases, but will also provide an opportunity for rare liver disease patients to discuss or share their own experiences and challenges. These activities will amplify the voices of the rare liver disease community as well as facilitate communication and profound discussions regarding rare liver diseases.

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.”

• 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)

Events

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 will feature conversations with patients and physicians to educate the public on four different topics and areas of concern regarding rare liver diseases. Viewers can view the episodes on GLI’s Twitter, Facebook and YouTube. Episode recordings remain available on GLI’s social media accounts.

GLI Living:
GLI Living is a new series of sessions that will take place every Tuesday at noon ET. Throughout these sessions, we will discuss what it is like to live with a rare liver disease and how we can improve their quality of life - whether it be through emotional, psychological, or physical self-care - with pediatric and rare liver disease patients. These sessions will allow us to provide a voice to the underrepresented rare liver disease community members, to share, connect and to learn. In addition, by having a discussion about these topics and issues, it allows us to concentrate on the difficulties that rare liver disease patients encounter and spread awareness about rare liver diseases. Register here.

Extraordinary Young People:
Throughout the month, GLI will be having four pediatric rare story time events as part of our effort to educate the general public about rare liver diseases. In addition, these story time/chats will primarily be focused on children of all ages. Each Saturday of every week will be geared towards a different age group affected by rare liver diseases, incorporating age-appropriate discussion topics. During this event, Authors Kara and Evren Ayik will read Extraordinary: A Book for Children with Rare Diseases. This will not only contribute to our advocacy efforts, but also be vital in leading a discussion about patients’ experiences, specifically children whose voices may not be heard. Register here.

For more information, please contact the GLI Pediatric and Rare Liver Diseases Team at pedsrare@globalliver.org