Alagille Syndrome Awareness


International Alagille Syndrome Awareness Day

Beginning at midnight Eastern Time US on Sunday January 24th, join us for a 24 hour Aware-a-Thon to celebrate International Alagille Syndrome Awareness Day!

Increasing awareness of Alagille Syndrome is crucial to our mission. Through family stories, partner messages, expert talks and more, we can increase education about Alagille Syndrome with all stakeholders!

How can you be #ALGSAware and take part in the Aware-a-Thon?

Join us on the Aware-a-Thon Zoom link any time throughout the day on Sunday January 24th from midnight to 11:59pm ET US and follow along on all of our social media platforms for videos, talks, resources and interactive opportunities! Many resources will be available in multiple languages!

Stay strong. Press on. Together.

Come and go any time during the Zoom, and don’t forget to share!

Aware-a-Thon Zoom Meeting Link:
ALGSA 24 Hour Aware-a-Thon

Meeting ID: 836 6987 8562
Passcode: 012421

ALGSAwareness Toolkit

Alagille Syndrome is a rare disease, an autosomal dominant, genetic disorder associated with liver, heart, eye and skeletal abnormalities, facial features and more. ALGS Warriors may have any combination or severity of these symptoms, making ALGS one of the most difficult rare diseases to diagnose and treat.

Below you will find helpful tools for spreading awareness including social media posts, downloadable graphics and other printable resources. Follow us on Facebook, Twitter and Instagram for even more shareable information – @ALGSAlliance.

January 24th International Alagille Syndrome Awareness Day is a day to bring Alagille Syndrome to the forefront, celebrate our ALGS families and increase knowledge with physicians, scientists and in our communities! Together we can use our voices to help everyone become #ALGSAware!

Digital/Downloadable Resources

Use these files digitally by attaching to emails or download to hand out to family and friends. All of these resources help educate family, friends, physicians and other ALGS families you may know who are not yet connected to the Alliance.

What is Alagille Syndrome?

View alternate language translations here.

The Genetics of Alagille Syndrome

The Genetics of Alagille Syndrome

View alternate language translations here.

More Than a Liver Disease

More Than a Liver Disease

View alternate language translations here.

The ALGSAwareness Ribbon

The Alagille Syndrome Alliance awareness ribbon for ALGS reflects the significantly complex and uniquely varying severity of the disease throughout our ALGS community. This ribbon recognizes those affected by just a few organ systems and those affected by all organ systems. It is our hope that we can unite, relate and empower everyone dealing with ALGS, either mild or severe,and bring together those with significant organ representation who may not focus on ALGS as a whole but rather the organ system most affected.

We want our ALGS heart families, ALGS liver families, kidney families, and vascular families struggling through their diagnoses to know we are here fighting for them. We want to impress on our community that Alagille Syndrome cannot be treated as one single problem. Together, we can fight to find the cure through researching each organ system and supporting families who relate more to one significantly affected symptom.

TheAlagille Syndrome awareness ribbon is meant to encourage our ALGS families, scientists, researchers, and donors and show the world that we cannot be separated by symptom but rather united by uniqueness.

YELLOW – for the liver and digestive system.
RED – for the heart and circulatory system.
GREEN – for the kidneys and renal system.
BLUE – for the lungs and pulmonary system.
PURPLE – for the brain and vascular system.
CREAM/PEARL – for the skeletal system.

As Alagille Syndrome affects so many systems, we want to spread the word to other communities. Our research could help others with quicker diagnosis and access to better treatments. If you are a part of any organizations or groups serving the communities of any of these systems, please share our information. Together, we can find better treatments and a cure for ALGS and other associated diseases!

Right click to save any of these ribbons to use on your social media profiles.

ALGS Awareness Ribbon

ALGSAwareness Ribbon

ALGS Warrior Ribbon

ALGS Warrior

Liver Warrior Graphic

ALGS Liver Warrior

ALGS Heart Warrior Ribbon

ALGS Heart Warrior

Kidney Warrior Ribbon

ALGS Kidney Warrior

Science Spotlight

We are excited about the advances in treatments and other potential therapies for Alagille Syndrome. We are proud to partner with all of our researchers, scientists and biotech.

Melissa Gilbert

Dr. Melissa Gilbert of Children’s Hospital Philadelphia

Emma Andersson Bio Image

Dr. Emma Andersson
Karolinska Institute

Dong Bio Pic

Dr. Duc Dong
Sanford Burnham Prebys

Surendran

Dr. Kamesh Surendran
Sanford Research

Mirum Spotlight

Mirum Pharmaceuticals

Retrophin Graphic

Retrophin, Inc.

Albireo Graphic

Albireo Pharma, Inc.

GALA

Global Alagille Alliance Study (GALA)

Care Clinics

Children’s Hospital of Philadelphia and Stanford Children’s Health are leading the way to better standards of care with Alagille Syndrome clinics. Leading clinicians at these institutions care for ALGS Warriors from around the world. Read more about the incredible work happening by clicking below.

Children's Hospital of Philadelphia Logo

Children’s Hospital Philadelphia

Stanford Children's Health

Stanford Children’s Health

#ALGSAwareness Social Media Posts

Use these social media posts to show you are #ALGSAware. Tag us at @ALGSAlliance on Facebook, Twitter, Instagram and LinkedIn.

ALGSAwareness Day Facebook Stand Alone Pic

Go to facebook.com/profilepicframes and search “Alagille” to access all of the #ALGSAware profile frames and add to your own profile pic.

Click here to link to Profile Pic Frames.

Facebook Profile Frames

Facebook/Twitter/Instagram Post

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Facebook/Twitter/Instagram Post

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CHANGING LIVES TODAY

“Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.”

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