EP 15 Dana Brenner cover art

EP 15 Dana Brenner

EP 15 Dana Brenner

Listen for free

View show details

About this listen

 In this episode of Rare Awareness Radio, we sit down with Dana Brenner, a passionate advocate, parent, and community leader from CRELD1 Warriors. Dana shares her extraordinary journey navigating the complex world of rare disease diagnosis for her son Ray — a journey that spanned nearly a decade before discovering the cause: a newly identified mutation in the CRELD1 gene. Dana opens up about the challenges of raising a child with an undiagnosed condition, the gaps in access to genetic testing and care, and the critical role that parent communities play in driving research, advocacy, and support. She also speaks candidly about broader systemic issues impacting rare disease families and how we can work together to push for change. Through her work with CRELD1 Warriors, Dana is not only helping newly diagnosed families find hope and community, but she is also helping reshape how information and resources are shared in the rare disease landscape. This is a conversation about resilience, empowerment, and the transformative power of connection. If you're part of the rare disease community — or simply want to learn more about how families are creating change — you won't want to miss this episode. 🎙️ Learn more about CRELD1 Warriors: https://www.creld1.com/ 🌟 Follow Rare Awareness Radio for more stories of courage and community. #RareDisease #RareAwarenessRadio #CRELD1 #Advocacy #RareDiseaseCommunity #PatientAdvocacy
activate_mytile_page_redirect_t1

What listeners say about EP 15 Dana Brenner

Average Customer Ratings

Reviews - Please select the tabs below to change the source of reviews.

Audible.com.au reviews

Amazon Reviews
No Reviews are Available
In the spirit of reconciliation, Audible acknowledges the Traditional Custodians of country throughout Australia and their connections to land, sea and community. We pay our respect to their elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.