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.

New to the Alagille Syndrome Community? Start by Saying Hello! One of the most powerful things you can do after an Alagi...
06/05/2026

New to the Alagille Syndrome Community? Start by Saying Hello!

One of the most powerful things you can do after an Alagille Syndrome diagnosis is connect with others who understand the journey.

Introducing yourself and your family to the Alagille Syndrome Alliance can open the door to valuable connections, trusted resources, support programs, and services you may not even know are available. Whether you're looking for information, seeking support, interested in research opportunities, hoping to connect with medical professionals, or simply wanting to meet others who truly "get it," we're here to help.

Every family's ALGS journey is unique, and no one should have to navigate it alone.

Tell us who you are.
Tell us where you're from.
Share a little about your ALGS journey.

From finding critical resources during difficult times to building lifelong friendships within the rare disease community, we're here to support you every step of the way.

📧 Email us at [email protected] to say hello and start a conversation.

Learn more about Alagille Syndrome, our programs, and our mission at https://zurl.co/yjtBl.

06/04/2026

We've come this far, now let's finish strong.

Thanks to the incredible generosity of our community, the Stronger Than ALGS Campaign has already raised $14,910 to support individuals and families affected by Alagille Syndrome.

Every dollar raised helps the Alagille Syndrome Alliance provide education, support programs, advocacy, community connections, and resources for patients and caregivers navigating life with ALGS.

But we're not done yet. We still have a ways to go to reach our fundraising goal by June 15th, and we need your help to get there.

Whether you've donated before, shared the campaign, created a fundraising page, or are considering making your first gift, every action makes a difference. Together, we can continue building a stronger, more connected ALGS community and ensure that families have the support they need every step of the way.

🎯 Help us close the gap and reach our goal.
💚 Make a donation today.
🔗 https://zurl.co/uGHG4

No matter how you participate, every effort is part of something bigger, fueling critical support, connection, and hope for families who need it most.

Join us. Share your story. Rally your team. You've got until June 15th.
And help prove that, together, we are truly .

Did You Know?Alagille Syndrome (ALGS) is more than a liver disease. It is a rare genetic condition that can affect multi...
06/03/2026

Did You Know?

Alagille Syndrome (ALGS) is more than a liver disease. It is a rare genetic condition that can affect multiple organ systems throughout the body, including the liver, heart, kidneys, blood vessels, eyes, bones, and more.

One of the most challenging aspects of ALGS is that no two individuals experience it the same way. Some people may face significant liver complications, while others are more affected by heart, kidney, vascular, or other health issues. This variability can make diagnosis, treatment, and everyday life especially complex for patients and families.

At the Alagille Syndrome Alliance, we are dedicated to supporting families, advancing research, and building hope for everyone affected by ALGS. By increasing awareness and education, we can help ensure that patients, caregivers, and medical professionals have the resources they need to navigate this rare disease.

Learn more about Alagille Syndrome, our programs, and our mission to improve the lives of those affected by ALGS at https://zurl.co/VNsin

🎓✨ 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. ♥️

Address

PO Box 22
Collierville, TN
38027

Telephone

+19012868869

Website

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