About Aicardi Goutieres Syndrome Advocacy Association (AGSAA)
The Aicardi Goutieres Syndrome Advocacy Association (AGSAA) is a global coalition of deeply dedicated parent advocates working alongside clinicians, researchers, and scientists. We are united in our desire to improve the lives of individuals and families living with and yet to be diagnosed with Aicardi-Goutières Syndrome. Everything we do reflects a sense of urgency to rescue our community’s potential and preserve quality of life. We’re focused on accelerating research, providing timely emotional and educational outreach, and developing ever-evolving clinical care recommendations to affected families.
The AGSAA is a 501c nonprofit foundation (tax ID 81-2738041)
For Rare Disease Day we will most likely do a fundraiser, a special podcast and social media posts
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