Alagille Syndrome in Adults

Together with the Alagille Syndrome Alliance (ALGSA), we are excited to announce the launch of a new Adult Alagille Syndrome Registry. This registry was developed through a partnership between GALA and ALGSA to advance understanding and care for adults living with Alagille syndrome. The registry is open to any individual 18 years and older with Alagille syndrome to participate online through a secure platform. Participation involves a one-time commitment of about 30 minutes, and as a thank-you, Amazon gift cards will be provided to all participants. We encourage families, clinicians, and researchers to spread the word—this registry represents an important step toward strengthening research and improving outcomes across the adult Alagille community. To participate in the registry, please scan the QR code above or click here.
