Are there good support groups for Alagille syndrome?
The Alagille Syndrome Alliance (www.alagille.org) is a good place to start if you are looking for support. They host events every three years to help families connect with each other.
The Childhood Liver Disease Research and Education Network (ChiLDREN) (https://childrennetwork.org/) works with multiple groups to support patients and families and to connect people with rare liver conditions. Visit their website to learn more about the support groups they partner with to see if any are right for you.
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Where do I find other people with Alagille syndrome?
The Alagille Syndrome Foundation (www.alagille.org) makes it easy to connect with other people with Alagille syndrome. They have a 3-day get-together (a symposium) every three years that you can attend to learn more about Alagille syndrome and meet other people and families affected by the condition.
You can also connect to other people in your area with liver conditions through the American Liver Foundation (www.liverfoundation.org).
Are there good support organizations for Alagille syndrome?
There are many groups that provide information and support to people with Alagille syndrome. Some of these support organizations are listed below.
- Alagille Syndrome Alliance (www.alagille.org)
- American Liver Foundation (www.liverfoundation.org)
- Canadian Liver Foundation (www.liver.ca)
- Childhood Liver Disease Research and Education Network (ChiLDREN) (www.childrennetwork.org)
- Children’s Liver Disease Foundation (CLDF) (www.childliverdisease.org)