Early Diagnosis: A Game-Changer for Patients

In the rare disease community, early diagnosis can put patients on a treatment plan faster and improve outcomes. But that depends on accessible and affordable screenings, genetic testing, and holistic care. Thankfully, there are policy solutions to make that a reality. 

August marked Spinal Muscular Atrophy (SMA) Awareness month, so we hear how this community advocates for greater access and affordability to improve care. We get the policy takeaways on how you can raise your voice for the rare disease community. Plus, hear one family’s story about their daughter’s diagnosis of SMA and why advancements in gene therapy are crucial. 

Hosts: 

Terry Wilcox, Executive Director, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest

Kate Pecora, Field Correspondent

Guests: 

Paul Melmeyer, VP of Public Policy & Advocacy, Muscular Dystrophy Association

Lizmara and Angel Figueroa

ChiChi Nnoli, Patient Correspondent

Links: 

What Wouldn’t You Do Right Now For Your Child With a Rare Disease? with SMA advocate Khrystal Davis

Early Definitive Diagnosis of Spinal Muscular Atrophy Could Improve Outcomes

This Is Now the Biggest Driver of Employers’ Healthcare Costs, Survey Shows

Need help?

The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org

Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?

Drop us a line: podcast@patientsrising.org

The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.