The Rare Disease Diversity Coalition (RDDC) is a partnership of rare disease experts, patient and provider organizations, and health equity advocates. I encourage everyone to attend conferences when you can. I meet the most interesting experts in the field of the nonprofit world.
RDDC Rare Disease Panels at the 2025 NMQF Leadership Summit African Americans underrepresented in research and clinical trials Historical discrimination, malpractice and lingering mistrust There are several differences between Clinical Genetic Testing and Research Genetic Testing including cost, requirements of
Oya Gibert is a Multiple Myeloma patient and advocate whose story highlights the years of misdiagnosis and delayed care too SARAH JONES - Eosinophilic Granulomatosis - Rare Disease Diversity Coalition
The National Organization for Rare Disorders (NORD®), in collaboration with the Rare Disease Diversity Coalition (RDDC), Diamond DeShields opens up about her journey with keratoconus—a rare eye disease that nearly sidelined her WNBA career. RDDC partnered with NMQF for the Annual NMQF Leadership Summit on Health Disparities & Spring Health Braintrust, April 28
Standing Up for Rare Disease Patients: Our 4-Year Journey In this episode, Sarita is joined by Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition (RDDC), to discuss Rare Disease Diversity Coalition (RDDC) - "Know Your Options: Careers in Clinical Trial Research"
Holly Jones, Person Living With Myositis Guest speakers from NORD's Rare Cancer Coalition share their organizations' efforts to address diversity, equity and inclusion The RDDC working groups bring together experts in rare diseases, advocates for diversity, patients, health care professionals, and members of
Effecting Change: Diversity & Cultural Competence in Research RDDC: About the Coalition Page
Jocelyn Cooper - Rare Disease Diversity Coalition | 2025 Rare & Radiant Pride Briefing RDDC Power of Community Panel at the 2025 NMQF Leadership Summit
RDDC: Opportunities Page Rare Disease Diversity Coalition Celebrates with 2nd Annual RISE Awards
The Rare Disease Diversity Coalition (RDDC) is here to help you and your organization implement diversity, equity, and inclusion strategies and tactics. Demeshia's Scleroderma Story
Racial and ethnic minorities and other underserved populations experience greater barriers to screening, diagnosis, and Holly Jones was diagnosed with polymyositis at 19 years old after symptoms began disrupting her daily life as an emerging
Senator Amy Klobuchar accepts the RISE Award from the Rare Disease Diversity Coalition on the eve of Rare Disease Day 2025. Jenifer Waldrop on the importance of attending the Global Genes' RARE Health Equity Forum
Fueling Diversity in Rare Disease Research Rare Disease Diversity Coalition is dedicated to addressing the extraordinary challenges faced by historically underrepresented
U.S. Senator Amy Klobuchar Accepts the RDDC RISE Award Presented in partnership with the Rare Disease Diversity Coalition (RDDC), the RARE Health Equity Summit brings together
What is the difference between Clinical Genetic Testing and Research Genetic Testing? Advancing Equity in Rare Healthcare Rare Disease Diversity Coalition February Meeting
Rare Disease: Addressing Inequities in Care and Improving Quality Demeshia Montgomery was diagnosed with scleroderma at 19 years old. What began as pain in her fingers led to a diagnosis of
What is IRB and what does it mean for my protection? At some point, you or your child may be asked to participate in a clinical The Coalition brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions.
Podcast: Importance of Diversity in Clinical Trials and Genetic Testing Insights: A Conversation On Healthcare Disparities With Linda Goler Blount of The Black Women's H Black Women's Health Imperative, Rare Disease Diversity Coalition
From Genes to Generations: Knowing Your Family History FPWR Joins the Rare Disease Diversity Coalition
Changing the Game: 5 Years of RDDC + WNBA Champion Diamond DeShields' Story of Strength Nicholas (Nick) Kelly was diagnosed with cystic fibrosis at just three months old but has never let that define him. A dietitian by Rare Disease Diversity Coalition | LinkedIn
Araya's Story: A Young Warrior Living with ANCA Vasculitis The Rare Disease Diversity Coalition (RDDC) was founded to address the extraordinary challenges faced by rare disease
Jenifer Waldrop talks about why rare disease and health equity advocates should attend the Global Genes RARE Health Equity Patients with rare diseases often face long diagnostic journeys and have limited treatment options. The Rare Disease Diversity Coalition is This February 13, 2025, PQA Quality Forum Webinar, focused on addressing inequities in care and improving quality in rare
Walk In Our Shoes: The Experience of Rare Disease Patients This panel explored the vital role that community gatekeepers and leaders play in connecting rare disease advocacy efforts to
From Statehouse to Capitol Hill: A Guide to Effective Advocacy for Rare Diseases Inequities in the Rare Disease Community
RDDC Advancing Health Equity Panel at the 2025 NMQF Leadership Summit 2021 RARE Health Equity Summit Tuesday, 6/28/22 1 PM -2 PM EST The Rare Disease Diversity Coalition (RDDC) was founded on the idea that when providers,
NORD is pleased to announce a collaboration with the Rare Disease Diversity Coalition (RDDC) on a three-part webinar series Black Women's Health Imperative Announces New Rare Disease
RDDC Fellowship Exit Presentation - Dr. Aditi Kantipuly In Conversation with Jenifer Waldrop, MSHRD, Executive Director, RDDC | Indo US Bridging RARE Summit
Podcast - Battling Cystinosis: Perspectives from a Doctor and a Patient Turned Advocate The Coalition brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence- Sarah Jones brings over 25 years of nonprofit and health program leadership to her rare disease advocacy. Living with
Join Jenifer Waldrop, MSHRD, Executive Director of the Rare Disease Diversity Coalition (RDDC), as she reflects on her inspiring Announces New Rare Disease. Diversity Coalition. Author: dforsythe Published on: May 29, 2020. First-Of-Its Kind Coalition Will Convene Healthcare Leaders
RDDC Capitol Hill Briefing April 2025 Moving the Needle: Rare Disease Clinical Trials Ecosystem for Patients of Color
What does it mean to give consent to participate in a research study? Research study involving people (human participants) must OYA GILBERT - Multiple Myeloma - Rare Disease Diversity Coalition
This powerful panel from the 2025 National Minority Quality Forum Leadership Summit brought together leading experts to Rare Diseases and Patient Care Inequity
What does it really take to move the needle on health equity for rare diseases, especially on Capitol Hill? In this episode, we are On April 30, 2025, as part of its ongoing mission to advance equity in rare disease care, the RDDC, with the support of Senator
The Rare Disease Diversity Coalition is now welcoming applications for the annual RDDC Fellowship Program, which prepares emerging healthcare leaders to RDDC Home Page RDDC Diversity in Clinical Trials Panel at the 2025 NMQF Leadership Summit
RDDC 2023 Fellowship Exit Presentation - Rewaa Elgazzar RDDC 2025 Fellowship Exit Presentation - Siwaar Abouhala Ep 107. Health Equity Insights: Discussing the Inequities in the Rare Disease Community Report
Health Equity and Rare Disorders Rare Disease Diversity Coalition 2023 Reception On the eve of World Rare Disease Day our Rare Disease Diversity Coalition (RDDC) hosted its 2nd Annual RISE Awards and 3rd
Do you want to help give the rare disease community in your state a stronger voice? Join your state's efforts to create a Rare Holland & Knight's Public Policy & Regulation Group is proud to partner with the Rare Disease Diversity Coalition (RDDC) for a
Watch a livestream of the inaugural meeting of the Rare Disease Diversity Coalition here. In this episode of Diverse Faces of Rare Disease, we highlight the powerful story of Araya and her parents, Darius and Shameuga Understanding Consent for Clinical Trials and General Research Studies.
More than 30 million Americans— nearly 1 in 10—have a rare disease. For rare disease patients of color, racial disparities have Institutional Review Board and Your Protection Global Genes and the Rare Disease Diversity Coalition Expand
Global Genes 2022 Health Equity Summit Highlights In this moving and deeply rooted segment of the SOS Rare & Radiant Pride Briefing, Jocelyn Cooper shares her mission to Equity and access have not been priorities in rare disease research – that's changing. The Rare Disease Diversity Coalition is
Legislative and policy initiatives are critical to addressing health disparities in rare diseases, particularly for historically HPS Partner Stacy Kerr and Managing Director Kriston McIntosh are joined by Linda Goler Blount, the President & CEO of the
Living Beyond Cystic Fibrosis: Nicholas Kelly's Story of Strength & Purpose Diversity Elusive in Rare Disease Research The Rare Disease Diversity Coalition (RDDC) is an initiative launched by BWHI to address the extraordinary challenges faced by historically
The National Organization for Rare Disorders is pleased to continue its collaboration with the Rare Disease Diversity Coalition Global Genes, a leading rare disease patient advocacy organization, held an inaugural RARE Health Equity Summit on DEI Case Studies from NORD's Rare Cancer Coalition
Craig Martin, CEO of Global Genes, discusses the organization's recent collaboration with the Rare Disease Diversity Coalition Rare Disease Diversity, Jenifer Waldrop RDDC Shaping Policy for Accessibility Panel at the 2025 NMQF Leadership Summit
Watch a live stream of the inaugural meeting of the Rare Disease Diversity Coalition here. Create a Rare Disease Advisory Council in Your State Rare disease advocacy groups are at the forefront of driving diversity, equity, and inclusion (DEI) within healthcare. This panel
Rare Needs Representation Too | CHEST Advocates - American