The Rare Advocates First Episode: We finally met at GLIA 2022
Description
The Rare Advocates, S1 E1: We finally met at GLIA 2022
On today’s episode, our first podcast! Devon, Rafa, and Patrick finally met at the GLIA 2022 conference in Philadelphia (https://theglia.org/2022gliaconference). Patrick gave the opening remarks and welcome at the GLIA Advocacy Workshop, and the pair managed to make contact with scientists from Eli Lilly about our stalled clinical trial.
💙About the 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
💙 https://agsaa.org/about-ags
💙Join the Conversation: @agsadvocacy on all socials
#rarediseases #aicardigoutieressyndrome #aicardigoutieres #disabilitiesawareness
United States
