Create a Memorial Page
Patients and families affected by Alagille Syndrome are the heart of all we do at the ALGSA. Individual and family stories have significant purpose and bring value in many ways. They serve to provide hope to the community, build trust, memorialize those we’ve lost and provide support to their families. They lift the patient voice on topic-specific campaigns and initiatives and help families build a critical support network of ALGS friends. They also inform biotech and pharma partners, medical professionals, and others about aspects of ALGS at home and how it affects patients and caregivers outside of the hospital and clinical setting. Lastly, sharing your story allows the ALGSA leadership and staff to know you more personally which opens up the door for other opportunities like joining us on a partner call to share your story, become a speaker or moderator at an event, or be referred to opportunities outside the ALGSA. We are eager to share your story and will match it up with campaigns, events, meetings and discussions with partners, and/or share on social for the ALGSA network to enjoy.