Read along for some updates about cutting-edge technology in rare liver disease that should improve prompt diagnosis, ongoing feedback, and effective interventions.
Vote for GLI for a Healio Disruptive Innovators Award
Great news! Healio named GLI CEO Donna Cryer a nominee for its Disruptive Innovators Award β Patient Voice. We are grateful for the recognition of her leadership in advancing research and problem-solving in liver disease and equipping other advocates! π³ Vote for Donna and other disruptive innovators today!
A3: The Learning Experience
Washington DC, September 30 β October 2, 2023
If you are a liver patient, caregiver, family member, or clinician searching for an opportunity to become an effective advocate through interactive lessons on how to share your story, understand recent research & development, how to leverage social media and more. βπΌ Apply now
GLI Pediatrics and Rare Liver Disease Holds Semi-Annual Council Meeting
During our semi-annual council meeting in July, we collaborated with industry groups, nonprofit organizations, patient advocacy groups, and patients themselves to collectively share our accomplishments and identify areas of mutual interest and brainstormed themes for next yearβs Rare Liver Disease Month β we canβt wait to share more!
AI as a Clinical Trial Enrollment Strategy in Rare Diseases
Galmed Pharmaceuticals, a leading clinical biopharmaceutical company has teamed up with OnKai AI to facilitate the connection between free clinics and specialist centers to their PSC clinical trials with the goal of ensuring all patient populations affected by PSC have an opportunity to participate. Through this approach, Galmed Pharmaceuticals and OnKai AI strive to foster greater inclusivity, ensuring that all patient populations affected by PSC have the opportunity to participate.
Landmark Fully Robotic Liver Transplant Sets the Stage for Future Transplantations
Technological advancements in robotics have empowered a distinguished surgical team at Barnes-Jewish Hospital in St. Louis to successfully conduct the first fully robotic liver transplant in the US. Following the minimally-invasive transplant procedure in May, the patient experienced accelerated recovery compared to conventional surgical methods. We are watching the reshaping of the patient care landscape.
New GLI Survey for Patients and Caregivers
As we strategize for the upcoming year, we invite robust patient input to drive our priorities. If you are a rare disease patient or caregiver, please complete the following survey.
Please share the survey with your networks!
Upcoming Events
- August 7β18, 2023: Everylife Foundation Rare Across America
- September 18β19, 2023: Global Genes RARE Health Equity Forum
- September 19β21, 2023: Global Genes RARE Advocacy Summit
For more information about the Pediatric and Rare Liver Diseases Council or to learn more about joining, please visit our webpage or email pedsrare@globalliver.org.
