New Season, New Format: Striving to meet the needs of the expanding liver health- interested community for timely information on must-know events and news specific to our Council communities in Liver Cancer, NASH, Pediatric and Rare Liver Diseases, Liver Health Policy, and the activities of Global Liver Institute in a format and frequency that respects your busy lives, we have reconfigured our newsletter schedule.
The Latest at GLI is the first of our quarterly updates dedicated to informing you about the latest happenings at Global Liver Institute and their impact, as well as sharing educational resources for patients, caregivers, and advocates. This issue This issue highlights key events of January, February, and March 2022.
With this new newsletter structure, you will still receive our monthly informational community-specific newsletters; editions dedicated to pediatric and rare liver diseases news, liver health policy news (LHPU news), NASH news, and liver cancer news will be shared twice a year, respectively.
We hope you enjoy! Please send feedback or news items to: email@example.com
Donna R. Cryer, JD
President & CEO
Global Liver Institute
Pediatrics & Rare Liver Diseases
Throughout the month of February, Global Liver Institute led its second annual Rare Liver Diseases Month. Our month-long #RareAware campaign featured communication, education, and advocacy efforts throughout the month, focused solely on rare liver diseases. Below we highlight two key events that occurred.
Be sure to stay on the look-out for #RareAware’s report next month.
Primary Biliary Cholangitis (PBC) Externally-Led Patient-Focused Drug Development (EL-PFDD)
On 4th February 2022, GLI was joined by clinical and patient experts to discuss the current unmet needs in PBC: how PBC itself affects quality of life, how the current therapeutic landscape affects quality of life and how best to design PBC clinical trials of the future. The PBC EL-PFDD is a critical step in providing the liver community a greater understanding of PBC, directly from those affected by it, to inform and drive forward the next generation of clinical trials and treatment approvals.
The Burden of Pediatric Rare Liver Diseases
On February 25, 2022, GLI held a virtual briefing to hear directly from patients, patient advocacy organizations, and providers, about the challenges and opportunities surrounding rare liver diseases. This briefing was presented in partnership with the PFIC Network and NASPGHAN, featuring GLI Policy Director Andrew Scott; Dr. Rohit Kohli, MBBS, MS, FAASLD, Chief of Gastroenterology, Hepatology and Nutrition at the Children’s Hospital Los Angeles; Emily Ventura, PFIC Caregiver and Executive Director of the PFIC Network, and PSC/AIH patient; and GLI pediatric and rare program manager Nicole Wells, MA.
Policy & Advocacy
On February 16th, GLI applauded the confirmation of the new Food and Drug Administration (FDA) Commissioner Dr. Robert Califf. With a new FDA Commissioner, we look forward to continuing our strong partnership and advancing liver patient centric policies.
On March 16th, GLI’s Advanced Advocacy Academy (A3) held a webinar on Clinical Trials Application Navigation. GLI invited Rachel Coe, Manager of Science & Regulatory Affairs at Biotechnology Innovation Organization (BIO), to walk through some general tips and tricks for searching and applying to participate in clinical trials.
Updates from the Liver Action Network (LAN)
On March 3rd, GLI proudly announced the expansion of its LAN to include a partnership with Empire Liver Foundation. Based in New York City, this transformative organization provides clinical training to healthcare professionals on how to screen and treat patients with Hepatitis B & C in a variety of clinical settings. GLI looks forward to continued growth of the LAN in 2022 with goals of having representation in every state in the US as well as growing the network’s global footprint outside of the US.
On March 4th, GLI’s LAN released a global proclamation pledging collective support of World Obesity Day to acknowledge the strong connection between NASH and obesity. The need for action has never been greater, as the worldwide burden of obesity could affect upwards of 1 billion people by 2025, subsequently increasing the number of individuals at risk for developing NASH.
Global Liver Institute (GLI) launches the final NASH Externally-Led Patient Focused Drug Development Meeting Outcome Report. On November 4th 2021, Global Liver Institute led an Externally Led Patient-Focused Drug Development Meeting on NASH. This GLI led EL-PFDD meeting on NASH provided regulators, and drug developers the invaluable opportunity to hear from patients and caregivers directly about the challenges and burdens of this life-threatening condition.
View the report here.
On January 6, 2022 Global Liver Institute, in partnership with TriSalus Life Sciences, launched Liver Central, a comprehensive site for all things liver cancer. Liver Central provides patients, clinicians, and researchers a unique hub to find information on ongoing clinical trials, treatment options and educational materials about the liver and liver cancers. Visit Liver Central, for more information.
At the end of 2021, GLI’s Liver Cancer Council established the first International Workgroup, chaired by Dr. Maria Reig. This workgroup will focus on facilitating international partnerships in the hopes of sharing best practices in liver advocacy, identifying gaps in international liver cancer initiatives, and creating an action plan to address barriers.
Living with Rare Liver Diseases in Europe Webinar
On February 18 GLI organized and hosted its first webinar dedicated to pediatric and rare liver diseases in Europe to highlight the complexities within the field: diagnosis, treatment, care pathways, impacts upon the family, transition to adulthood.
The event was endorsed by: EASL (European Society for the Study of the Liver), MetabERN (European Reference Network for Hereditary Metabolic Diseases), LPI (Liver Patients International) and the PBC Foundation.