Rare Disease Parenting and The Power of Community w/ Effie Parks
Receiving a rare genetic disease diagnosis for yourself or a loved one is devastating news, especially when the diagnosed is a child.
For families, navigating the challenges of these diagnoses requires more than just medical care, it takes a strong, compassionate support system.
In this episode of CareTalk, David E. Williams and John Driscoll sit down with Effie Parks to dive into the critical role of community during a rare disease diagnosis and the strong support system that has developed around parenting those afflicted.
This episode is brought to you by BetterHelp. Give online therapy a try at https://betterhelp.com/caretalk and get on your way to being your best self.
As a BetterHelp affiliate, we may receive compensation from BetterHelp if you purchase products or services through the links provided.
TOPICS
(0:36) Sponsorship
(1:52) Welcome Effie Parks
(2:31) Effie Parks’ Journey into the Rare Disease Community
(4:31) Why Effie Parks Started Once Upon a Gene
(6:18) Advice to Families in the Rare Disease Community
(7:12) Grappling with Grief and Guilt
(10:45) Understanding Why We Experience Guilt
(12:18) Examining Healthcare Policies That Impact Rare Diseases
(14:43) How Healthcare Professionals Can Be More Sensitive to Families
(16:27) Building a Supportive Rare Disease Community
(18:19) Advice for Government Agencies When Approaching Rare Disease Policy
(20:09) Engaging Patients and Families in Healthcare Policy
(20:50) How the Entire Healthcare Ecosystem Can Become More Involved
(22:46) Creating a Virtual Event for the Rare Disease Community
(24:20) Areas of Hope in Rare Diseases
🎙️⚕️ABOUT CARETALK
CareTalk is a weekly podcast that provides an incisive, no B.S. view of the US healthcare industry. Join co-hosts John Driscoll (President U.S. Healthcare and EVP, Walgreens Boots Alliance) and David Williams (President, Health Business Group) as they debate the latest in US healthcare news, business and policy.
🎙️⚕️ ABOUT EFFIE PARKS
Effie Parks has become a leading voice in the rare disease community after her son Ford’s diagnosis with CTNNB1 syndrome. As the host of the award-winning “Once Upon a Gene” podcast, Effie combines powerful storytelling with resource-sharing to support families navigating rare genetic disorders. She extends her advocacy through speaking engagements at medical and advocacy conferences, where she works to bridge gaps between patients, families, and healthcare stakeholders. Driven by a mission to foster understanding and resilience.
🎙️⚕️ ABOUT ONCE UPON A GENE
The Once Upon a Gene podcast is a heartfelt and informative show dedicated to families and individuals impacted by rare genetic disorders. Hosted by Effie Parks, a passionate advocate and mother of a child with CTNNB1 syndrome, the podcast explores the unique challenges and triumphs faced by the rare disease community. Through candid interviews with patients, parents, medical experts, and advocates, Once Upon a Gene offers invaluable resources, insights, and a sense of solidarity for listeners.
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CareTalk: Healthcare. Unfiltered. is produced by Grippi Media.
