FAQs - Patients & Families

Finding your way through autoimmune liver disease can feel overwhelming, especially when the diagnosis is new or the road has been longer than expected. This page answers common questions about A-LiNK, A-LiNK Connections, and the resources available to patients, parents, caregivers, and young adults.

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  • A-LiNK stands for the Autoimmune Liver Disease Network for Kids. It is a learning health network focused on improving care and outcomes for children, teens, and young adults living with autoimmune liver diseases, including Autoimmune Hepatitis, Primary Sclerosing Cholangitis, and Autoimmune Sclerosing Cholangitis.

    A-LiNK brings together clinicians, researchers, patients, and families to learn from one another and improve care over time.

  • A-LiNK Connections is the patient and caregiver community within A-LiNK. It is a place for patients, parents, and caregivers to connect, share experiences, learn from experts, and help shape projects that support families affected by autoimmune liver disease.

    Through A-LiNK Connections, families can participate in support groups, educational meetings, resource development, advocacy efforts, and opportunities to bring the patient and caregiver voice into research and quality improvement.

  • A learning health network is a community where patients, families, clinicians, and researchers work together to improve care. The goal is to learn from real experiences, data, research, and shared expertise — then use that learning to make care better for the next patient and family.

  • A-LiNK Connections is open to patients (14+), parents, caregivers, and family members affected by pediatric or young adult autoimmune liver disease.

    This may include families navigating:

    • Autoimmune Hepatitis

    • Primary Sclerosing Cholangitis

    • Autoimmune Sclerosing Cholangitis (overlap of PSC & AIH)

  • There are many ways to get involved, and you can choose what fits your time, interest, and comfort level.

    You might:

    • Join a monthly project & education meeting

    • Attend a caregiver support group

    • Attend a patient support call

    • Subscribe to the newsletter

    • Help with projects

    • Connect with other families

    To get started, please fill out the interest form and let us know how you would like to be involved. Once we receive your form, we will follow up with the appropriate meeting links and next steps.

  • A-LiNK Connections offers several ways for patients, parents, and caregivers to connect, learn, and get involved.

    • Caregiver Support Group: A welcoming space for parents and caregivers to talk with others who understand the experience of caring for a child, teen, or young adult with autoimmune liver disease.

    • Patient Meetings: A space for patients and young adults to connect with peers, share experiences, and talk about topics that matter to them, such as managing appointments, school or college, transition to adult care, independence, relationships, and living with chronic illness.

    • A-LiNK Project & Education Meetings: Broader community meetings that may include education, project updates, resource development, discussion, and opportunities for families to share feedback.

    Some meetings focus on specific topics, such as school support, transition to adult care, coping as a caregiver, research participation, or advocacy. Others focus on building resources that can help families across the network.

  • A-LiNK was modeled after ICN, a learning health network for children with IBD. ICN provides infrastructure and support for A-LiNK’s quality improvement efforts, and A-LiNK Connections ensures patient and caregiver input is integrated across that work.

  • No. A-LiNK and A-LiNK Connections provide education, resources, and connection, but they do not replace medical care or advice from you or your child’s healthcare team.

    Always contact your hepatologist, gastroenterologist, or medical provider with questions about symptoms, medications, test results, treatment decisions, or urgent concerns.

  • If you have questions about A-LiNK Connections, patient and family resources, meetings, or ways to get involved, please contact the A-LiNK Connections team at alinkconnections@gmail.com.

    For medical questions or urgent concerns, please contact your healthcare provider or 911.

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