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NORD Rare Disease Centers of Excellence – Rare Disease Day Grand Rounds 2025

February 12 @ 2:00 pm - 3:00 pm EST

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The international theme for Rare Disease Day is Equity. This Rare Disease Day, the NORD Rare Disease Centers of Excellence (RD CoE) Program will highlight three of our RD CoE sites that promote equitable access to care or research for rare disease patients and their families.

The University of Iowa: Dr. Bharatendu Chandra and Dr. Hatem El-Shanti will share their experience from the Iowa Undiagnosed Diseases Program highlighting the clinical landscape, challenges, and emerging approaches for individuals suffering from undiagnosed diseases.

The University of Miami Miller School of Medicine: Dr. LéShon Peart and Dr. Nicholas Borja will discuss programs at their site that involve multidisciplinary clinics, outreach programs, social support programs, access to care and treatment, and access to clinical trials and studies.

University of California, Los Angeles (UCLA): Dr. Bianca Russell will talk about the challenges and successes of providing genetics care for the indigenous and rural communities on the central coast of California and how UCLA is working to provide more equitable access to care through community clinics.

This program is open to all clinicians, researchers, students/trainees, advocates, and families interested in learning about equitable programs for rare disease patients.

Details

Date:
February 12
Time:
2:00 pm - 3:00 pm EST
Event Categories:
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Website:
https://rarediseases.zoom.us/meeting/register/s5kTZj6mQN2MhZjbWN-61g#/registration