Official ALGSA Tweet

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

[Official ALGSA Tweet @ALGSAlliance]

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

[Official ALGSA Tweet @ALGSAlliance]

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: https://t.co/8uXqPa4RMr

#AlagilleSyndrome #ADAA

[Official ALGSA Tweet @ALGSAlliance]

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.

https://t.co/iv0SI99ViV

[Official ALGSA Tweet @ALGSAlliance]

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
🔗 https://t.co/XuJpznskJ1

[Official ALGSA Tweet @ALGSAlliance]

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
🔗 https://t.co/G5NhhOqxRT

[Official ALGSA Tweet @ALGSAlliance]

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
[email protected]

[Official ALGSA Tweet @ALGSAlliance]

❌ 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.

[Official ALGSA Tweet @ALGSAlliance]

No caregiver should feel alone. 💛 ALGSA is here to connect, support, and empower families affected by Alagille syndrome.

👉 Follow us and visit https://t.co/fyffuTxJVg to explore resources, connect with the community, and learn how you can support families like Dante’s.

[Official ALGSA Tweet @ALGSAlliance]

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.

[Official ALGSA Tweet @ALGSAlliance]

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: https://t.co/agVrmqEDc2

[Official ALGSA Tweet @ALGSAlliance]

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
https://t.co/dCFCfrickQ

[Official ALGSA Tweet @ALGSAlliance]

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 💙
https://t.co/sA2hPO93hd

[Official ALGSA Tweet @ALGSAlliance]

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

[Official ALGSA Tweet @ALGSAlliance]

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

[Official ALGSA Tweet @ALGSAlliance]

🌍💙 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.

[Official ALGSA Tweet @ALGSAlliance]

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

[Official ALGSA Tweet @ALGSAlliance]

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. 🌍💛

[Official ALGSA Tweet @ALGSAlliance]

⏰ 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

[Official ALGSA Tweet @ALGSAlliance]

📬 The next issue of ALGSA Jr. Magazine is ready!

🇺🇸 U.S. families only: Get a hardcopy by emailing your mailing address to [email protected]

🌍 Digital download available in English, Spanish & Portuguese—email to join the list.

#ALGSA #ALGSAJr #RareDiseaseKids

[Official ALGSA Tweet @ALGSAlliance]

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