(RDDC) Hill Briefing

Rare Disease Diversity Coalition (RDDC) Hill Briefing:

"Addressing Health Disparities in
Rare Disease: A Call to Action”

April 30, 2025

11:30 - 12:30 PM EST

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OUR EVENT

This briefing will bring together key stakeholders to address the health disparities in the rare disease community, with a focus on the barriers faced by marginalized groups. The event will feature presentations on RDDC’s patient and caregiver survey findings, insights from the NIH on rare disease data, and patient perspectives on navigating the challenges of diagnosis and care.

We will conclude with a moderated discussion and a call to action on advancing health equity in rare disease policies.

EASE on Down The Road with us virtually April 28, 29, 30th en route to The Capital City July 28-30, 2022 for the Interactive High-Touch Coaching™ Experience!

  Explore the 10 "Pulses" of the BWHI coaching model
  Apply them to successfully reach program goals
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  Evolve through engagement in activities, events and more
HIGH TOUCH ROAD Virtual Journal

Addressing Health Disparities in Rare Disease: A Call to Action

In-Person*

April 30, 2025

11:30 AM - 12:30 PM EST
Location

SVC-208,
U.S. Capitol, Washington, D.C.

Senate Side Of Capitol

The room is located on the Senate side of the Capitol Visitors Center. Attendees will enter through the Capitol Visitors Center entrance, across the street from the Supreme Court. Once inside, you will head down to the ground level to check in at the Senate Appointments desk. If you get lost, ask someone in a red suit jacket where to go.

capitol image Rare Disease Diversity Coalition (RDDC) Hill Briefing

HOST

Adrianna Hopkins

Adrianna Hopkins

News Anchor, Journalist

FEATURED SPEAKERS

Jenifer Waldrop

Jenifer Waldrop, MS

Rare Disease Diversity Coalition

Linda Goler Blount: RDDC Featured Speaker

Linda Goler Blount

MPH President

Black Women's Health Imperative

RISE AWARD RECIPIENTS

Liz Kennerley

Patient RISE Award

Liz Kennerley
Dr. LaTonya Washington

Provider RISE Award

Dr. LaTonya Washington
Dr. Harsha Rajasimha

Caregiver RISE Award

Dr. Harsha Rajasimha
NIH Logo

Health Equity RISE Award

NIH - National Center for Advancing Translational Science
Rare Diseases Clinical Research Network

Honoree Health Equity RISE Award

Rare Diseases Clinical Research Network
Stephanie Marshall: RDDC 2025 Patient Advocacy RISE Award

Patient Advocacy RISE Award

Stephanie Marshall
Novartis: 2025 Industry Partner RISE Award

Industry Partner RISE Award

Novartis
RDDC-TBA

Congressional RISE Award

TBA
RDDC-TBA

Congressional RISE Award

TBA

2024 RARE DISEASE DAY RECEPTION

The event will comply with all House and Senate Ethics rules.


Health and Accessibility Information:

At RDDC, health is at the heart of our work, and we want to ensure a safe and inclusive experience for all attendees.

  • Masking: While masks are not required, we encourage masking if you have any health conditions or prefer added protection, as we cannot guarantee six feet of distance in event spaces.
  • Accessibility: If you require special assistance, such as wheelchair accessibility or other accommodations, please let us know in advance so we can best support you.

Thank you for helping us create a welcoming and mindful environment for everyone!

Cancellation and Refund Policy

The event is Free. We understand that unknowns happen, and so we just request that should you be unable to attend, that you email Taylor Dominguez at tdominguez@bwhi.org.

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