August 29, 2025

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

33 minutes

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].

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By Kira Dineen

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