Alagille Syndrome Alliance

Alagille Syndrome Alliance The Alagille Syndrome Alliance is an international support and advocacy network for people with ALGS and their families.

Founded in 1993, the Alliance has grown to include several thousand community members located all over the world.

🎓✨ Congratulations to the Class of 2026! ✨🎓Today, we're celebrating the incredible graduates in the Alagille Syndrome co...
06/01/2026

🎓✨ Congratulations to the Class of 2026! ✨🎓

Today, we're celebrating the incredible graduates in the Alagille Syndrome community!

From kindergarten graduations to high school diplomas, college degrees, trade certifications, and every milestone in between, we know that each achievement represents determination, resilience, and countless moments of perseverance.

To all of our graduates: we are so proud of you and everything you've accomplished. Your hard work, courage, and strength inspire us all.

We'd love to celebrate with you!

📸 Share your graduate's name and photo in the comments below, or tag in your graduation posts so we can cheer them on with the entire community.

Let's fill this post with the amazing faces and stories of our ALGS graduates!

Planning for the future can feel overwhelming, but you don’t have to navigate it alone.Join this upcoming Parent Univers...
05/29/2026

Planning for the future can feel overwhelming, but you don’t have to navigate it alone.

Join this upcoming Parent University webinar from our partner, Protected Tomorrows, to learn more about ABLE Accounts, including:
✔️ The basics of ABLE accounts
✔️ How ABLE programs differ by state
✔️ Best practices and common mistakes to avoid
✔️ When and how these tools can support your loved one’s future

This free virtual session is designed to help families better understand financial planning tools that can support individuals with disabilities and chronic medical conditions.

June 11, 2026
1:00 PM EST
FREE Virtual Webinar

We encourage our Alagille Syndrome families and friends to attend and explore valuable resources for long-term planning and financial empowerment.

👉 Register here: https://zurl.co/YLmfq

🔍 Myth vs. Fact: Alagille Syndrome Edition❌ MYTH: Alagille Syndrome is always diagnosed at birth.✅ FACT: While some chil...
05/28/2026

🔍 Myth vs. Fact: Alagille Syndrome Edition

❌ MYTH: Alagille Syndrome is always diagnosed at birth.

✅ FACT: While some children show symptoms early in infancy, many individuals experience delayed or difficult diagnoses because ALGS symptoms can vary widely and sometimes resemble other conditions. Some parents and even grandparents are diagnosed because their children or grandchildren were diagnosed, surprising the whole family with a new diagnosis to learn about.

Early recognition is critical to helping families access specialized care, support, and resources sooner. We strive as an organization to raise awareness about the importance of early diagnosis!

That’s why education and advocacy matter. 💚

"One of the most important takeaways I gained is that, although we all have ALGS, many of us are affected in different w...
05/27/2026

"One of the most important takeaways I gained is that, although we all have ALGS, many of us are affected in different ways. This means we might each experience things a little differently, but can still relate to one another and support each other through the hard times.”

The 2026 ALGS Adult Retreat TAMPA brought together adults living with Alagille Syndrome for connection, support, education, and understanding. Nearly half of the attendees had never met another adult with ALGS before.

Participants left feeling less alone, more confident advocating for themselves medically, and more connected to the ALGS community. Since the retreat, participation in ongoing ALGSA support groups has continued to grow, reflecting the lasting impact of meaningful connection and support and many of the participants have continued to stay in touch with one another and the ALGSA - which we love!

We invite you to read the full ALGS Adult Retreat TAMPA Analysis Report and learn more about the impact this program has on adults living with ALGS:
" https://zurl.co/7v8h7

Thank you to every adult who shared their voice and lived experiences with us. Your voices matter deeply and are helping shape the future for those coming behind you. 💚

Today, we pause to remember and honor the brave men and women who made the ultimate sacrifice while serving our country....
05/26/2026

Today, we pause to remember and honor the brave men and women who made the ultimate sacrifice while serving our country. 🇺🇸

On this Memorial Day, we extend our gratitude to those who gave their lives in service and to the families who carry their memory forward each day.

As we gather with loved ones and reflect on the meaning of this day, we also recognize the strength, resilience, and unity that continue to guide communities like ours.

From all of us at the Alagille Syndrome Alliance, we wish you a safe and meaningful Memorial Day.

ALGSA at a Glance 💙The Alagille Syndrome Alliance is dedicated to supporting individuals and families impacted by Alagil...
05/22/2026

ALGSA at a Glance 💙

The Alagille Syndrome Alliance is dedicated to supporting individuals and families impacted by Alagille Syndrome through connection, advocacy, education, and research.

Our mission is built around three core pillars:

✨ Supporting Families
Connecting families to resources, community, and support systems so no one feels alone in their journey.

🔬 Advancing Research
Funding and supporting research efforts while empowering the medical and scientific community to better understand and treat ALGS.

🌟 Building Hope
Creating awareness, inspiring advocacy, and working toward a future where every ALGS Warrior can thrive.

Together, we are building a stronger, more connected ALGS community around the world. 🌎

Whether you're a current follower, a new follower, newly diagnosed or have been part of the ALGS community for many years, we are so happy that you're here and we'd love to connect with you.

📧 Email [email protected] to schedule a conversation today. ♥️

Learn more about us here: https://zurl.co/HkbMI

Special Shout Out to the Grandparents of the ALGS Community ♥️Today, we want to recognize and celebrate the grandparents...
05/19/2026

Special Shout Out to the Grandparents of the ALGS Community ♥️

Today, we want to recognize and celebrate the grandparents who stand beside families living with Alagille Syndrome.

Grandparents often play an extraordinary role in the journey, offering love, strength, wisdom, and support in countless ways. Whether you are helping care for your grandchild, supporting parents through difficult moments, traveling to medical appointments, or simply being a steady source of encouragement, your presence matters more than you know.

Many families facing rare diseases rely on the quiet strength of grandparents who show up again and again with patience, compassion, and unwavering love.

To all the grandparents who are walking this journey with their ALGS grandchildren, we see you, we appreciate you, and we thank you.

Your love helps carry families through some of the hardest moments and reminds children that they are surrounded by people who believe in them.

We are grateful for you. ♥️

Transition of care is a critical and often complicated part of the rare disease journey.For patients living with Alagill...
05/18/2026

Transition of care is a critical and often complicated part of the rare disease journey.

For patients living with Alagille Syndrome and PFIC, moving from pediatric to adult care can bring major challenges, from navigating a less coordinated healthcare system to learning how to manage complex care more independently.

In partnership with Rare Disease 360 this 3-part CLD Summit video series featuring Dr. Jennifer Vittorio and Dr. Shikha Sundaram takes a closer look at what effective transition of care should involve and why it matters so much.

Part 1: Why transition planning should begin early and how to build readiness over time
Part 2: The unique barriers rare disease patients face when moving into adult care
Part 3: Practical tips, support resources, and how to prepare for the final pediatric visit

These conversations reflect many of the concerns raised at the 2025 Cholestatic Liver Disease Summit, where transition of care was a major topic across panel discussions, research roundtables, and shared patient experiences.

Watch the full 3-part series:

Part 1: https://zurl.co/6ymBz
Part 2: https://zurl.co/RKJsw
Part 3: https://zurl.co/Kxz1b

The momentum behind Stronger Than ALGS is growing and it’s all powered by the incredible families, friends, and supporte...
05/15/2026

The momentum behind Stronger Than ALGS is growing and it’s all powered by the incredible families, friends, and supporters stepping up to make a difference. 💛

A huge THANK YOU to the amazing teams already fundraising and sharing their stories:
✨ Team Mirum
✨ Luke's Warrior Run
✨ More Than a Job - A Promise
✨ Kelley Family
✨ Keys for the Future
✨ Lorcana Mama
✨ Team Bluey
✨ We Are Warriors

Every team helps raise critical funds for ALGSA family programming, advocacy, awareness, research initiatives, and support for ALGS Warriors around the world.

Want to get involved?
💪 Join an existing team
💛 Start your own fundraiser
💸 Make a donation
🌎 Help us show the world that we are

Register or support a team here: https://zurl.co/a704K

Nutrition plays an important role in supporting growth and health for individuals living with Alagille Syndrome.Because ...
05/14/2026

Nutrition plays an important role in supporting growth and health for individuals living with Alagille Syndrome.

Because ALGS can affect digestion, nutrient absorption, and calorie needs, many patients require specialized nutrition strategies and careful monitoring.

Swipe through to learn key facts about nutrition and ALGS.

Always speak with your physician or dietitian before making changes to your diet or nutrition plan. 💚


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PO Box 22
Collierville, TN
38027

Telephone

+19012868869

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