Connecting families across A-LiNK to enable shared progress & involvement of family & patient partners.
A-LiNK Connections is a community of AILD patients 14+, families & guardians who are committed to enhancing the quality of life for children, adolescents, and their families who live with AILD.
A-LiNK Connection’s Mission
A-LiNK Connection’s mission is to unite patients, families, clinicians & researchers to collaboratively further research & improve clinical outcomes with the understanding & consideration of patient experiences. Through this, A-LiNK Connections aims to provide meaningful connections & resources to pediatric AILD patients & families by cultivating & sustaining a platform to advocate for ourselves and others & develop accessible, patient-centered resources.
A-LiNK Connection’s Vision
A-LiNK Connections seeks to provide a supportive space with accessibility to patient-centered resources to increase awareness and knowledge of pediatric autoimmune liver disease (AILD). We seek to establish standardized, reliable & consistent care to improve outcomes for AILD patients.
A-LiNK Connections’ Core Values
A-LiNK Connections’ Purpose
Collaborate:
Work with researchers, clinicians, and care teams to impact outcomes and engage with patients/families at established and new A-LiNK centers.
Advocate:
Spotlight the issues important to patients/families at the local, national, and international levels.
Support:
Create an inclusive and welcoming community for patients with AILD and their families. Host support groups, participate in monthly calls and journal clubs.
Educate:
Develop resources for patients/families including a comprehensive booklet for AILD diagnosis. Ensure patients/families are knowledgeable about AILD. Provide crucial insight to clinicians, researchers, and care teams about topics important to patients with AILD and their families.
