--- title: "RDDC: What We Do Page" description: Our organization works to eliminate health disparities for diverse rare diseases by developing and deploying an evidence-based suite of advocacy tools. image: https://www.rarediseasediversity.org/hubfs/What-Feature-RDDC.jpg --- [Skip to main content](https://www.rarediseasediversity.org/what-we-do#main) [![RDDC logo TM](https://www.rarediseasediversity.org/hubfs/RDDC-logo-TM.svg) ![RDDC logo TM Sticky](https://www.rarediseasediversity.org/hubfs/RDDC-logo-TM.svg) ![RDDC logo TM mobile](https://www.rarediseasediversity.org/hubfs/RDDC-logo-TM.svg) ![RDDC logo TM mobile sticky](https://www.rarediseasediversity.org/hubfs/RDDC-logo-TM.svg) ](https://www.rarediseasediversity.org?hsLang=en) - [Show submenu for About the Coalition About the Coalition ](https://www.rarediseasediversity.org/about) - [Our Team](https://www.rarediseasediversity.org/rddc-team) - [Advisory Council](https://www.rarediseasediversity.org/rddc-advisory-council) - [Industry Alliance](https://www.rarediseasediversity.org/industry-alliance) - [Partners](https://www.rarediseasediversity.org/rddc-partners) - [Show submenu for What We Do What We Do ](https://www.rarediseasediversity.org/what-we-do) - [Working Groups](https://www.rarediseasediversity.org/what-we-do) - [Policy In Action](https://www.rarediseasediversity.org/policy-in-action) - [Get Involved](https://www.rarediseasediversity.org/rddc-get-involved) - [Show submenu for Patient Support Patient Support ](https://www.rarediseasediversity.org/additional-patient-support) - [Breaking Barriers: Genetic Testing](https://www.rarediseasediversity.org/breaking-barriers) - [Patient Stories](https://www.rarediseasediversity.org/rddc-patient-stories) - [Show submenu for The Latest The Latest ](https://www.rarediseasediversity.org/the-latest) - [Opportunities](https://www.rarediseasediversity.org/rddc-opportunities) - [News & Announcements](https://www.rarediseasediversity.org/blog) - [Resources & Research](https://www.rarediseasediversity.org/research-resources) - [Events](https://www.rarediseasediversity.org/rddc-events) Open main navigation Close main navigation - Show submenu for About the Coalition About the Coalition - About the Coalition - [About the Coalition](https://www.rarediseasediversity.org/about) - [Our Team](https://www.rarediseasediversity.org/rddc-team) - [Advisory Council](https://www.rarediseasediversity.org/rddc-advisory-council) - [Industry Alliance](https://www.rarediseasediversity.org/industry-alliance) - [Partners](https://www.rarediseasediversity.org/rddc-partners) - Show submenu for What We Do What We Do - What We Do - [What We Do](https://www.rarediseasediversity.org/what-we-do) - [Working Groups](https://www.rarediseasediversity.org/what-we-do) - [Policy In Action](https://www.rarediseasediversity.org/policy-in-action) - [Get Involved](https://www.rarediseasediversity.org/rddc-get-involved) - Show submenu for Patient Support Patient Support - Patient Support - [Patient Support](https://www.rarediseasediversity.org/additional-patient-support) - [Breaking Barriers: Genetic Testing](https://www.rarediseasediversity.org/breaking-barriers) - [Patient Stories](https://www.rarediseasediversity.org/rddc-patient-stories) - Show submenu for The Latest The Latest - The Latest - [The Latest](https://www.rarediseasediversity.org/the-latest) - [Opportunities](https://www.rarediseasediversity.org/rddc-opportunities) - [News & Announcements](https://www.rarediseasediversity.org/blog) - [Resources & Research](https://www.rarediseasediversity.org/research-resources) - [Events](https://www.rarediseasediversity.org/rddc-events) - Search - [Donate](https://www.rarediseasediversity.org/?campaign=677445) [Donate](https://www.rarediseasediversity.org/?campaign=677445&hsLang=en) Search # What We Do RDDCTM works to eliminate health disparities for diverse rare disease patients. We do this by developing and deploying an evidence-based suite of advocacy tools and research interventions that will provide tangible solutions for rare diseases. Through these efforts, we strive to improve** **the lives and health outcomes of diverse rare disease patients around the world. ![RDDC What We Do](https://www.rarediseasediversity.org/hs-fs/hubfs/Titlebar-What-We-Do.png?width=519&height=431&name=Titlebar-What-We-Do.png) ## Diversity in Research & Clinical Trials Working Group The Diversity in Research & Clinical Trials working group aims to address pipeline and systemic issues that inhibit low-income people and communities of color from participating in research and clinical trials. **Achievements:** - Know Your Options: Careers in Clinical Trial Research webinar - [RDDCTM & GeneClips Research](https://www.youtube.com/watch?v=UUMSMh1ri38), Clinical Trials, & Genetic Testing Educational Video Series ### Diversity in Research & Clinical Trials Leadership ##### Jocelyn Cooper Group lead ##### Dr. Debra Regier (Children's National Hospital) Co-chair ##### Veronica Moore (Amgen) Advisor ## Government Regulation, Legislation & Policy Working Group The Government Regulation, Legislation & Policy working group aims to advance and protect the mission of the RDDCTM in the evolving public policy landscape with our allies and partners. This includes improving awareness and understanding of rare disease and diversity issues, especially as they relate to rare diseases from historically marginalized populations. **Achievements:** - FDA User Fee legislation-formal comment on the Senate FDA Safety and Landmark Advancements Act - RDDCTM is recognized in congressional record for the work, overall mission, membership, and initiatives.  ### Government Regulation, Legislation & Policy Leadership ##### Fulcrum Public Affairs Group lead ##### Daron Watts (Watts Group LLC) Advisor ## Patient, Provider, Caregiver (PPC) Journey The Patient, Provider, and Caregiver Journey aims to advance implementation of equity centered strategies to improve the rare disease journey faced by diverse and underserved populations through empowering patients and caregivers, providing education to medical professionals, accelerating diagnosis, and ensuring timely access to treatment and clinical trials, thereby enhancing the overall health outcomes for patients. ### Patient, Provider, Caregiver (PPC) Journey Leadership ##### Jocelyn Cooper Group Lead ##### Carlos Guerrero (Hairy Cell Leukemia Foundation) Co-Chair ##### Kari Rosbeck (TSC Alliance) Co-Chair ##### Dr. Sana Syed (American Muslim Health Professionals) Co-Chair ##### Deanna Darlington (Links2Equity) Co-Advisor ##### Sika Dunyoh (Travere Therapeutics) Co-Advisor ## Our Partners [![The Aarskog Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/The-Aarskog-Foundation.png?width=150&height=80&name=The-Aarskog-Foundation.png) ](https://www.aarskogsyndromefoundation.co.uk) [![association-of-black-cardiologists](https://www.rarediseasediversity.org/hs-fs/hubfs/association-of-black-cardiologists.png?width=150&height=80&name=association-of-black-cardiologists.png) ](https://abcardio.org) [![abcuro logo: Click to visit their web site](https://www.rarediseasediversity.org/hs-fs/hubfs/RDDC/abcuro.png?width=150&height=80&name=abcuro.png) ](https://abcuro.com) [![accessia 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