Aicardi-Goutières Syndrome (AGS) Resources

Caring for a child with any illness or injury can be overwhelming. To help you find answers to your questions and feel confident with the care you’re providing your child, we’ve created the following list of health resources. We hope they can help make this time in your family’s life a bit easier.

Advocacy Organizations

Chloe’s Fight Rare Disease Foundation is dedicated to supporting the development of cures and treatments for childhood lysosomal storage diseases (LSDs) by funding research, advocating policy for patients, and raising awareness.

Provides assistance and support to families affected by leukodystrophy, funds research projects, raises public awareness, and collaborates with international organizations to pool resources to develop research.

Hunter's Hope Foundation is a non-profit organization committed to giving hope through education and awareness, research, and family care for leukodystrophies.

Find answers to frequently asked questions and common issues shared by the leukodystrophy community. Access disease and research information and links to support resources.

It aims to exponentially accelerate the discovery of novel genetic variations responsible for childhood leukodystrophies and to translate these findings into clinical treatments.

Their fundraising efforts helped establish the nation's first Leukodystrophy Center of Excellence at CHOP. Learn about their cupcake challenge and how to get involved, and find information about current and upcoming clinical trials.

The M.O.R.G.A.N. Project is a national, community-based organization of volunteers dedicated to promoting awareness and facilitating support of parents caring for their children/young adults with special healthcare needs.

ULF is a non-profit, voluntary health organization dedicated to funding cutting-edge research and to providing patients and their families with disease information and medical referrals.

Provides information about multiple sulfatase deficiency (MSD), patient resources, events, family stories, research information and more.


Videos

Family from leukodystrophy event

This video includes interviews with families whose children have leukodystrophies, and highlights from the 2018 Leukodystrophy Center Family Conference at CHOP.


Websites

The mission of the National Institute of Neurological Disorders and Stroke (NINDS) is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.