This year, the #RareAware campaign theme was Pregnancy and Parenthood. The campaign focused on improving the patient experience, removing barriers to access and care, and expanding on the need for more patient engagement in research protocols for pregnancies and parents in the rare liver community.

• Delayed diagnosis, limited treatment options, and inadequate long-term care are significant causes of the high mortality and morbidity rates associated with maternal, neonatal, and pediatric rare liver disease patients.
• The #RareAware campaign leveraged social media to raise awareness and generate exposure for lesser-known medical conditions. By sharing patient narratives and promoting organizations supporting the community, the campaign captured attention and fostered excitement for advocacy.
• GLI created a safe space for sharing the needs and concerns for rare liver disease patients by engaging adults’ and children’s voices through three roundtable discussions and four GLI LIVE episodes.

• Continue to raise awareness of rare liver diseases and champion for better access to care through educational resources for patients and clinicians, ongoing outreach programs, and advocacy efforts.

• Establish partnerships with medical professionals, patient advocacy groups, and community organizations to foster a greater level of knowledge exchange and share best practices in maternal, neonatal, and pediatric care for rare liver disease patients.

• Utilize research and evidence-based solutions to propel the policy agenda to enhance early detection of pediatric and rare liver diseases and promote continuity of care in maternal health.