December 31, 2025

Giving Thanks

To our Alagille Syndrome community,

Nothing we do happens in isolation.

The work of the Alagille Syndrome Alliance is made possible by patients and caregivers who share their lived experience, by donors who turn compassion into action, and by physicians, scientists, researchers, volunteers, partners, and sponsors who commit their time, expertise, and trust to this community. Your collaboration strengthens care, advances understanding, and ensures that families affected by Alagille Syndrome are not navigating this journey alone. We are deeply grateful for every role you play and for the shared commitment that continues to move this work forward.

With gratitude and deep respect, we thank you.

Now, let's make a big splash in 2026 together!

Alagille Syndrome Alliance

Board of Directors, Leadership, and Staff

Our Amazing Partners and Sponsors in 2025

2025 ALGSA Mission Brief

Last week, we mailed our Facing ALGS Together: An ALGS Mission Brief to homes across our U.S. community. This brief reflects the challenges Alagille Syndrome patients and caregivers are facing today, as understood through ongoing engagement with the community, including surveys, polls, shared experiences, and one-on-one communication with patients, caregivers, and stakeholders.

It is important to acknowledge that this moment looks different than it did even a few years ago. With two FDA approved treatments now available, many patients are now experiencing meaningful relief from cholestatic pruritus, the most debilitating symptom of liver disease associated with ALGS. In the years following these approvals, community feedback has shown a meaningful decrease in patient and caregiver reported suffering in regions where one or both therapies are accessible. Reducing the traumatic and intense burden of pruritus has long been one of the greatest obstacles faced by this community, and progress in this area represents a profound shift for families. We extend our deepest thanks to the teams at Mirum Pharmaceuticals and Ipsen for their continued commitment to supporting individuals and families affected by ALGS worldwide.

As well, the Global ALagille Alliance (GALA) study continues to make a meaningful and lasting impact by advancing knowledge that is shaping our understanding of Alagille Syndrome. Patients, caregivers, clinicians, researchers, and partners across the community have already benefited from these insights, with even more to be learned as this work continues. We extend our deepest thanks to Dr. Binita Kamath, the entire GALA team -past and present, and to all those who have contributed data to the registry. Their commitment and collaboration will continue to inform care, research, and discovery for years to come.

Grounded in this same community input, the Mission Brief names the evolving realities families are navigating today, including daily life beyond symptom management, care coordination across the lifespan, mental health, and long-term outcomes. This work is carried by the patients and caregivers who share their experiences, the donors who make progress possible, and the physicians, scientists, volunteers, partners, and sponsors who stand alongside this community and will help shape the work ahead.

For those who may not have received a mailed copy, or who live outside of the United States, we have included the 2025 ALGSA Mission Brief for you, HERE.

Light the Way for ALGS - Virtual Candle Campaign

This winter, the ALGSA invites families, friends, and supporters around the world to take part in Light the Way for ALGS, a global candle campaign rooted in remembrance, connection, and hope.

From now through January 24, you can light a virtual candle on our global map to honor, remember, or celebrate someone impacted by Alagille Syndrome or the community in general. Each candle represents a life, a story, and a shared commitment to ensuring that no one facing ALGS feels alone. Together, these lights reflect the strength, compassion, and unity of the worldwide ALGS community.

When you make your dedication, your candle will appear on the map in your city or region, joining others across the globe. Messages of remembrance, gratitude, and love will scroll beneath the map, creating a living tribute to those who inspire this work and to the families who continue to move forward with courage.

Each contribution, beginning at $10, supports ALGSA’s mission to provide essential family programs, mental health support, education, and research collaboration, helping improve daily life and long-term outcomes for individuals and families affected by ALGS.