EP 11 Bhavna Dias

In this profoundly moving episode of Rare Awareness Radio, host Richard Juknavorian sits down with Bhavna Dias, a passionate advocate for Opsoclonus-Myoclonus-Ataxia Syndrome (OMAS)—a rare and devastating autoimmune neurological disorder. Bhavna's journey with OMAS began when her daughter, Amara, was diagnosed at just 18 months old, sending their family on a harrowing path of misdiagnoses, medical uncertainty, and a relentless fight for answers. Now, as the Executive Director of the UCLA Center for Social Impact, Bhavna blends her public health and policy expertise with her personal mission to improve awareness, research, and support for families navigating the complexities of rare diseases. In this conversation, she shares: ✅ The early signs of OMAS and the challenges of receiving an accurate diagnosis ✅ The emotional and physical toll of caregiving for a child with a rare disease ✅ How her professional background in public health influences her advocacy work ✅ The crucial need for more research, funding, and community support for rare diseases ✅ Her hopes for Amara’s future and why she continues to fight for all OMAS families This episode is an eye-opening look into the realities of parenting a child with a rare disease, the power of advocacy, and the resilience it takes to turn pain into purpose. 💜 Join the conversation and help spread awareness! 🔗 Learn more about OMAS and advocacy efforts at https://omslifefoundation.org/ 📢 Subscribe & follow for more stories on SoundCloud | YouTube | Apple Podcasts | Spotify at https://rareawarenessradio.org/ #RareAwarenessRadio #OMAS #BhavnaDias #RareDiseaseAwareness #AutoimmuneDisorder #PublicHealth #PatientAdvocacy #MedicalMystery #OpsoclonusMyoclonusAtaxia #Podcast #Parenting #Healthcare #RareDiseases