Today we celebrate Rare Disease Day 💙 At the ALGSA, we honor the strength, resilience, and courage of the rare disease community. Every story matters. Every voice deserves to be heard. Every warrior inspires hope. #RareDiseaseDay #LoveSomeoneRare #RareTruth

Living with chronic illness can take a toll on mental health. 💙 Join ADAA for a free live Q&A with clinical psychologist & author Jennifer Caspari on You Are More Than Your Body 🗓 Wed, Mar 11 | 12 PM ET Register: zurl.co/oD01C #AlagilleSyndrome #ADAA

Planning for the future is critical for adults with ALGS and families raising children with complex needs. We’re grateful to Protected Tomorrows for leading a meaningful webinar at our ALGS Adult Retreat on financial & special needs planning. zurl.co/rF7Tx

It’s #RareDiseaseMonth! A rare disease affects ≤1 in 2,000 people in any WHO-defined region. Rare diseases impact millions worldwide. This month, ALGSA stands with the rare disease community. 💕 📖 Source: Wang et al., 2024 🔗 zurl.co/F2SKl

ALGS & Heart Health Cardiac manifestations occur in 90%+ of people with Alagille Syndrome, making them the 2nd most common feature after liver disease. 📖 Source: Campbell et al., 2026 🔗 zurl.co/TCAmT

This #RareDiseaseDay (Feb 28), help us celebrate the people we love most. Join ALGSA’s #LoveSomeoneRare campaign! 📸 Submit a photo of someone you love with ALGS or a Rare Disease 📝 Include name, age & location 💬 Optional short caption Deadline: Feb 24 Roberta@alagille.org

❌ Myth: Alagille syndrome only affects the liver. ✅ Fact: Alagille syndrome is a complex, multisystem genetic condition. While liver involvement is common, it can also affect the heart, kidneys, eyes, bones, and blood vessels—and no two individuals experience it the same way.

No caregiver should feel alone. 💛 ALGSA is here to connect, support, and empower families affected by Alagille syndrome. 👉 Follow us and visit zurl.co/4iNk1 to explore resources, connect with the community, and learn how you can support families like Dante’s.

Cholestatic pruritus can be one of the most challenging symptoms of Alagille syndrome. LIVMARLI® is an FDA-approved treatment (ages 3 months+) designed to help reduce bile acid buildup and relieve ALGS-related itch—bringing meaningful relief for many patients.

Growth challenges are common in Alagille Syndrome, and standard growth charts don’t always tell the full story. New open-access research from the GALA Study Group in JAMA Network Open introduces ALGS-specific growth charts. 🔗 Read more: zurl.co/jY4CW

Menopause & perimenopause affect more than hot flashes—mood, sleep, and cognition are often misunderstood or misdiagnosed. 📅 Feb 4 | Free Live Webinar 🎙 Unmasking Menopause: Mood, Sleep, Cognition & Solutions with Dr. Corinne Menn 👉 Register today zurl.co/iQHTn

Looking for meaningful ways to learn, share, and advocate this ALGS Awareness Day? The ALGSA Awareness Day Toolkit is here to help! 👉 Download the Awareness Day Toolkit and follow along all day using #ALGSAware 💙 zurl.co/VkrJS

Our mission at the ALGSA is to mobilize resources, facilitate connections, promote unity, and advocate for a cure, inspiring, empowering, and enriching the lives of people affected by Alagille syndrome. 💙 #ALGSAware

On this Awareness Day, we’re shining a light on what ALGS is, why understanding its complexity matters, and the importance of continued education, research, and support for families worldwide. 💙 Follow along all day to learn more and help us spread awareness using #ALGSAware

🌍💙 International ALGS Awareness Day is here! 💙🌍 Today, the Alagille Syndrome Alliance (ALGSA) proudly launches our #ALGSAware Campaign with the question: 📍 Where in the world are you #ALGSAware? 👉 Follow along all day and help us spread awareness by using #ALGSAware.

TODAY only! Support ALGSA with Panda Express 🥡 Order online (pickup or delivery) and 28% goes to the Alagille Syndrome Alliance. 🔑 Code: 9009645 📅 Jan 23 📍 Participating locations nationwide Order now and help support ALGS families 💙 #ALGSA #Fundraiser #PandaExpress

We were honored to receive a package from our friends in Russia—a community of ALGS patients, caregivers, and physicians. Their letter shared the story of their mascot, Bilirubisha, and their impactful advocacy work. Thank you for all you do for the ALGS community. 🌍💛

⏰ 2 days to go! ⏰ 🥡 Support ALGSA with Panda Express on Jan 23rd! Order online (pickup or delivery) and 28% of your purchase will support the Alagille Syndrome Alliance. 🔑 Code: 9009645 Eat well. Give back. 💙 #ALGSA #AlagilleSyndrome #ALGS #Fundraiser #PandaExpress

📬 The next issue of ALGSA Jr. Magazine is ready! 🇺🇸 U.S. families only: Get a hardcopy by emailing your mailing address to stephanie@alagille.org 🌍 Digital download available in English, Spanish & Portuguese—email to join the list. #ALGSA #ALGSAJr #RareDiseaseKids

Honoring the legacy of Dr. Martin Luther King Jr. today. “Life’s most persistent and urgent question is, ‘What are you doing for others?’” At the Alagille Syndrome Alliance, this question guides our mission every day. #MLKDay #ServiceAboveSelf #ALGSA #RareDiseaseCommunity