Global Liver Institute
Toolkit
GLOBAL LIVER INSTITUTE
Toolkit
Rare Liver Diseases Month Overview
Toolkit
Videos
Resources
The #RareAware Advocate Toolkit this year was designed to empower individuals in sharing patient stories throughout Rare Liver Disease Month and beyond. Together, we made a difference by raising awareness, fostering connections, and driving meaningful change in rare liver diseases found in maternal, neonatal, and pediatric health.
Share Your Story
Use the power of your personal story as a catalyst for change. Continue to share your experience with rare liver diseases with our team for the opportunity to be featured in our newsletter, on our website, and more.
SHARE YOUR STORY
Be #RareAware on Social Media
Follow GLI on Facebook, LinkedIn, and Instagram and join the campaign by using #RareAware on all our platforms!
Sample Posts:
- February is Rare Liver Diseases Month. Use the hashtag #RareAware to spread awareness of rare liver diseases. Learn more here: https://globalliver.org/rare-liver-diseases-month/
- I am #RareAware because [connection to rare liver diseases] @globalliver
- There are over 100 rare liver diseases, but many of them are unknown. #RareAware
- A #rareliverdisease is a #liver disease that affects a small portion of the population. #RareAware
- Rare diseases affect over 300 million people worldwide. #RareAware
Share
#RareAware Graphics
Share these images on your social media accounts! Click on the image you would like to share and then right click (or long tap on mobile) to save it.
With Glycogen Storage Disorder you should you avoid foods high in sugar, (fructose & lactose)!
Did you know that those with Lysosomal Acid Lipase Deficiency require a low-lipid diet (less than 20g of fat each day) to avoid fat buildup and liver damage?
Primary Biliary Cholangitis (PBC) is an auto immune liver disease in which the bile ducts are inflamed and damaged over time.
Primary Sclerosing Cholangitis (PSC) is a liver disease that causes blocked bile ducts and scarring, resulting in abdominal pain and yellowing of the skin. PSC is also linked to celiac disease & auto immune hepatitis
Did You Know that Biliary Atresia (BA) can be detected by comparing a child’s stool to color cards? 💩 BA is a rare liver disease that appears in newborns in which the bile ducts become blocked – & the most common cause of liver transplantation in children.
Alpha-1 Atrypsin Deficiency is a condition in which the liver doesn’t produce enough of the protein AAT to protect the lungs . Around 15% of people with this lung disease 🫁 have related liverdisease – a complicated and under-diagnosed medical status.
Acute On Chronic Liver Failure (ACLF) occurs when a chronic liver disease patient’s liver suddenly stops working. While uncommon, ACLF is extremely serious & requires immediate hospitalization: It quickly leads to the failure of other organs and even death.
Liver cysts formed in Polycystic Liver Disease may not be cancerous, BUT they can cause complications to nearby organs.
Wilson Disease prevents the body from breaking down copper, leading to buildup.
With Zellweger syndrome, helper cells called peroxisomes can’t break down fat & toxins properly… making it tough to keep nearby cells healthy. Children with ZS rarely live past the first year of life.
Acid Sphingomyelinase Deficiency also known as Niemann-Pickdisease affects the metabolism of #fats in the body leading to damage in the liver, spleen, and brain in children.
Most cases of Progressive Familial Intrahepatic Cholestasis (PFIC), a disorder in which bile buildup leads to liver damage over time, requires liver transplantation.
Show Your Support
Share your rare voice and help us spread #awareness about rare liver diseases. Right click on the image to save it, add your organization logo, post it on your social media accounts with the below suggested caption:
We are proud to support Global Liver Institute’s #RareAware campaign which aims to raise awareness on the different types of rare liver diseases.
Post a Selfie
A picture is worth a thousand words. Download one of GLI’s #RareAware signs and post a picture of yourself with it; or get creative and make your own sign to use in a selfie! Tag us on social media and use the hashtag #RareAware
I am #RareAware [PDF]
Print and fill in the blank space with a short statement about what makes you rare! Then, snap a photo, tag, and post!
I am #RareAware because… [PDF]
Become a Liver Health Advocate
Register for GLI’s Advanced Advocacy Academy (A3)
GLI’s Advanced Advocacy Academy (A3) Symposium, a training program held annually in September, connects liver patients, caregivers, and family members with the information, skills, and opportunities that they need to effectively advocate for liver health across the health ecosystem.
Tune in to GLI LIVE
Every Wednesday, GLI’s President and CEO, Donna R. Cryer, JD, sits down with experts from policymakers to patient advocates to clinicians to research executives and more to have high-level conversations about the policies, people, and global forces that affect the patients with liver disease and their families. Every February, episodes focus on topics related to rare liver diseases.
Rare Liver Diseases Month Sponsors
