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RDDC News & Announcements

Voices of Vasculitis: A Call for Health Equity via Patient Recommendations
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In Conversation with the “So What?” and “What’s Next?” of Public Health Praxis in Rare Disease Research and Advocacy
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The Social Determinants of Rare Disease: An Intersectional Lens
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Eve Kakudji – My experience as an RDDC Fellow
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Elijah Richardson – Working with the RDDC and Undiagnosed Diseases Network
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Elijah Richardson - 2024 Fellowship Blog
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RDDCTM in Publications

Earning Their Trust: Challenges and Best Practices in Rare Disease Patient Recruitment
Rare Needs Representation Too
Why research for rare diseases is a nationwide concern
Healing Beyond the Hospital: Advancing Post-Acute Care Equity for Rare Disease and Transplant Patients
IndoUSrare Quietly Forges Collaborations Ahead of Bridging RARE Summit—Uniting the Global Village Amid Tariffs, Tensions
Advancing rare disease trials by overcoming patient recruitment challenges
Rare Disease Research Missing the Mark on Inclusion
Jenifer Ngo Waldrop of Rare Disease Diversity Coalition (RDDC)
Rare Diseases at Crossroads: Building on 42 Years of Progress Powered by the Orphan Drug Act
CLINICAL TRIALS - The Power of AI in Overcoming Patient Diversity Challenges
Health organizations collaborate to address idiopathic pulmonary fibrosis on Rare Disease Day 2025
Strickland Boosts Rare Disease Research for Underserved and Minority Patients
Rare Disease Diversity Coalition to Host 2nd Annual RISE Awards on the Eve of Rare Disease Day
Rare Disease Diversity Coalition Releases Groundbreaking Report to Advance Health Equity for Patients with Ultra-Rare Blood Disorder
The Bluff City Medical Society Foundation and Rare Disease Diversity Coalition Launch Three-Part Webinar Series on Improving Health Equity for Rare Diseases
Global Genes and the Rare Disease Diversity Coalition Expand Effort to Accelerate Diagnosis of Rare Disease in Underserved Communities
How to connect patients with rare diseases to clinical trials
Know Your Family History
Bringing Awareness to the Plight of Rare Disease Patients
Rare Disease Diversity Coalition to Host 2nd Annual Rare Disease Day Reception
RARE Health Equity Forum seeks to put ideas into action
Rare Diseases, Clinical trial research and global demographic population changes present complex challenges in healthcare
Reps. Kelly, Matsui, Dunn, Thompson introduce legislation to support access to evidence-based care for rare disease patients
Health Disparities in Newborn Screening:
Rare Disease Day pulls more participation, creativity and diversity in 2023 pharma and advocacy campaigns
Marginalized groups face added barriers to rare disease treatment access
Waldrop: Inflation Reduction Act undermines rare disease research
Celebrating Rare Insight, Knowledge, and Advocacy for Rare Disease Day
Podcast: Workforce Diversity in Clinical Trial Research
Podcast: Cultural competencies and health literacy within the healthcare system
Hope for Rare Diseases
RDDC Co-sponsors a rare disease survey focused on patients, caregivers, and those from underrepresented populations
New Leader Chosen to Direct Coalition Serving Diverse Rare Disease Patients; Will Give Remarks at Global Genes RARE Health Equity Summit November 9-11th
RARE Round-table series - How are rare disease biotechs/industry addressing diversity and inclusion? (page page 22, with participants from Travere and Illumina)
Seizing the Moment for Change - Rare Disease Diversity Coalition (page 18, based on interviews with Sika Dunyoh and Eve Dryer with Travere Therapeutics)
Why Language Matters? (page 28, with contributions from Beverley Francis-Gibson, SCDAA, and Joaquin Baca, American Medical Association)
Amplifying the Voices of Patient Advocacy in Addressing Diversity (page 41, with contributions from Lauren Lee, Nephcure, and Tammy Boyd, Black Women’s Health Imperative)

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