Rescuing Potential: Learn about the Aicardi Goutieres Syndrome Advocacy Association скачать в хорошем качестве

Rescuing Potential: Learn about the Aicardi Goutieres Syndrome Advocacy Association

Has someone you know been diagnosed with Aicardi Goutieres Syndrome? Learn about the Aicardi Goutieres Syndrome Advocacy Association. In this video, dad advocate and volunteer shares during the United Leukodystrophy Foundation Conference how the Aicardi Goutieres Syndrome Advocacy Association helps caregivers. 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 using our learned experience and honoring those before us. Presented at the AGS session of the 2023 ULF Family Conference (https://agsaa.org/2023-ulf). Chapters: 0:00 Intro by Patrick Winters 0:49 Who We Are: AGSAA 2:29 AGSAA Mission 3:14 AGSAA Approach 4:15 Our AGSAA Community 5:40 AGSAA Networking 6:39 AGSAA Resources (Guides, Announcements) - https://agsaa.org/resources 8:10 AGS Patient Registry - http://agsaa.org/ags-patient-registry 10:35 AGS Patient Registry - Community Driven Innovation 12:09 AGS ECHO Program - https://agsaa.org/echo 13:12 AGSAA Webinars 💚The Aicardi Goutieres Syndrome Advocacy Association works to improve the lives of individuals and families living with Aicardi-Goutieres Syndrome (AGS). 💚AGSAA is a 501(c)(3) nonprofit, charitable foundation 💙Our Mission: Rescuing Potential. Everything we do reflects a sense of urgency to rescue patient potential and preserve quality of life. We’re focused on accelerating research and providing timely emotional outreach and educational support alongside evolving clinical care recommendations to affected families. 💚 Socials: @agsadvocacy on all socials 💙 Podcast: https://anchor.fm/agsadvocacy/ #aicardigoutieressyndrome #disabilitiesawareness #raredisease #aicardigoutieres #rarediseaseday #rarediseases #leukodystrophy #symptomsofleukodystrophy #dystonia #raresyndrome