Join us for an enlightening conversation on Cerebral/Cortical Visual Impairment (CVI) in the context of rare diseases with our special guest, Rachel G. Bennett, the esteemed Director of CVI Now Services at Perkins School of Blind. As we delve into the unique challenges faced by individuals with rare diseases and CVI, Rachel shares her expertise, personal anecdotes, and innovative approaches to support those navigating this complex intersection.

Tune in as we explore breakthroughs, debunk misconceptions, and envision a brighter future for rare disease families, disability advocates, researchers, and healthcare professionals. This episode is a must-listen for anyone seeking valuable insights and practical strategies in the realm of #CVI and rare diseases.

🔍 Key Topics: CVI, Rare Diseases, Disability Advocacy, Caregiving, Innovation, Collaboration

👥 Guest: Rachel G. Bennett, Director of CVI Services, Perkins School of Blind💚 https://www.instagram.com/cvinow/ 💙 CVInow.org

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💚The Aicardi Goutieres Syndrome Advocacy Association works to improve the lives of individuals and families living with Aicardi-Goutieres Syndrome (AGS).

💙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.

💚AGSAA is a 501c nonprofit 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.

#aicardigoutieressyndrome #disabilitiesawareness #raredisease

🎧 Audible: https://music.amazon.com/podcasts/ce67f9a8-3b3a-453b-a689-52db2feaf375/the-rare-advocates

🎧 Spotify: https://open.spotify.com/show/3S2K2zmVYauOgktU8G3Pdx

🎧 Apple Podcast: https://podcasts.apple.com/us/podcast/the-rare-advocates/id1653511092

🎧 Google Podcast: https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9jOWVmMDc1OC9wb2RjYXN0L3Jzcw?sa=X&ved=2ahUKEwihnZ-usKL7AhWupWoFHc9AC3QQ9sEGegQIARAC

🎧YouTube: https://www.youtube.com/channel/UCOBML-3m7Q_iWZW3fvItFgA

#aicardigoutieres #rarediseaseday #rarediseases #leukodystrophy #symptomsofleukodystrophy #dystonia