#356 From Statehouse to Capitol Hill: A Guide to Effective Advocacy for Rare Diseases

What does it really take to move the needle on health equity for rare diseases, especially on Capitol Hill? In this episode, we are joined by Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition (RDDC). Under her leadership, the coalition is tackling systemic inequities across the rare disease journey, from timely diagnosis to clinical trial access, treatment development, and sustained care. With partnerships across biotech, government, and patient advocacy groups, RDDC is reshaping the policy landscape to ensure historically underrepresented communities are not left behind. Right now we are capturing Jenifer’s insider perspective on advocacy strategies, legislative progress, and how every member of the rare disease community can engage in meaningful change.  Topics Covered in This Episode: Why the Rare Disease Diversity Coalition (RDDC) was created Unique health disparities impacting rare disease patients Barriers faced by black, brown, and LGBTQ+ communities in rare disease care Collaborations between advocacy organizations and biotech leaders like Amgen Legislative efforts, including RDDC’s HEARD (H.R.1750) health equity bill with Rep. Marilyn Strickland Strategies for engaging Congress and policymakers effectively How patients and families can prepare for Capitol Hill advocacy meetings Practical advice for advocates who feel powerless but want to get involved Long-term vision for advancing equity in rare disease research, care, and policy Resources:  Rare Disease Diversity Coalition (RDDC) Website The Orphan Drug Act 1983 strongly influenced by The National Organization for Rare Disorders (NORD) H.R.1750 - HEARD Act of 2025 (Health Equity and Rare Disease Act of 2025)  The Tuskegee Syphilis Study   We Work For Health  Relevant DNA Today Episodes :  Amgen's Urea Cycle Disorder Series Part 1: #282 The Evolution of Caring for Females With OTC Deficiency Amgen's Urea Cycle Disorder Series Part 2: #323 Supporting Ongoing Urea Cycle Disorder (UCD) Care Amgen's Urea Cycle Disorder Series Part 2: #338 Social Determinants of Health and Mental Health in Urea Cycle Disorders   Connect with DNA Today: Shoutout to listener Grace Dougherty for recommending Jenifer Waldrop to be a guest on the show! Do you have someone you want to hear on DNA Today? Send a pitch to [email protected].  Get ready, genetic nerds—another brand-new episode of DNA Today drops next Friday! You can always count on us to deliver fresh content every Friday.  While you wait, why not dive into our library of over 350 episodes? Binge them all on Apple Podcasts, Spotify, our website, or wherever you love to listen—just search “DNA Today.” Prefer watching? We’ve got you covered! For the past four years, we’ve been recording episodes with video, including some filmed at the iconic NBC Universal Stamford Studios. Check them out on our YouTube channel!  DNA Today is hosted and produced by Kira Dineen, MS, LCGC, CG(ASCP)CM . Our Video Lead is Amanda Andreoli. Our Social Media Lead Liv Davidson. And our logo Graphic Designer is Ashlyn Enokian, MS, CGC.  See what else we are up to on Instagram, X (Twitter), BluSky, Threads, LinkedIn, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to [email protected].