Rare Awareness Radio
Rare Awareness Radio
Podcast Description
Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
Podcast Insights
Content Themes
The podcast focuses on rare diseases, advocacy, and the intersection of healthcare and technology, with episodes highlighting topics such as the role of AI in drug development, the importance of early diagnosis, and community support, featuring stories like Yiwei She's mission with the TNPO2 Foundation and Adam Clatworthy's work with CRELD1 Warriors.
Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
Living on Both Sides of the Stethoscope — Dr. Deb Ondrasik on CACNA1A, Advocacy, and Hope
In this episode of Rare Awareness Radio, we sit down with Dr. Deb Ondrasik—pediatrician, rare disease advocate, and mother to a daughter living with CACNA1A-related epileptic encephalopathy.
Deb shares her extraordinary journey navigating life as both a healthcare provider and caregiver, and how her daughter’s diagnosis propelled her into advocacy. From the challenges of early developmental delays to the transformative power of genetic testing, Deb offers insight into the barriers families face—and how we can build a more responsive, compassionate system.
She also discusses her work with the CACNA1A Foundation, the importance of building community, and the emotional toll—and resilience—of parenting a medically complex child. Whether you’re a clinician, parent, policymaker, or simply curious about the lived realities of rare disease families, this conversation is packed with heart, honesty, and hard-won wisdom.
🔗 Learn more about the CACNA1A Foundation: https://www.cacna1a.org
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#RareDisease #CACNA1A #RareAdvocacy #PediatricNeurology #GeneticTesting #DisabilityAdvocacy #RareAwarenessRadio #ParentingWithPurpose
Disclaimer
This podcast’s information is provided for general reference and was obtained from publicly accessible sources. The Podcast Collaborative neither produces nor verifies the content, accuracy, or suitability of this podcast. Views and opinions belong solely to the podcast creators and guests.
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