Rare Disease + the Fight for Funding

Today’s medical research and development creates the cures of tomorrow. But it requires immense amounts of funding to develop safe and effective drugs, treatments, and medical devices. In the rare disease space, funding is in short supply.

Hear how rare disease organizations harness the power of grassroots advocacy to raise support for their community. Dawn Ireland, President and Founder of Congenital Diaphragmatic Hernia (CDH) International, shares how she launched the first CDH organization from her living room over twenty years ago, their ongoing successes, and the road ahead. 

Plus, parents Zach and Shelby Gallegos share the story of their nearly one-year-old daughter, Reagan, who is a CDH survivor. They give listeners a glimpse into their lives and the challenges of this rare birth defect. 

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, Patients Rising

Guests:

Dawn Ireland, Founder and President, CDH International

Zach and Shelby Gallegos, Parents to Reagan

Stephanie Tomlinson, patient correspondent

Links:

Statement: Build Back Better Offers No Guarantee to Lower Patient Costs

Watch: President Biden Delivers Remarks on the Cost of Prescription Drugs

Documents Reveal the Secrecy of America’s Drug Pricing Matrix

Watch: Biosimilar Discussion Lab

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.