Rare Disease SC

South Carolina Rare Disease News

Find links to recent news and items of interest about rare diseases, both in South Carolina and nationwide.

Opportunities to Improve Care for Children With Rare and Complex Conditions When Traveling Across State Lines

The majority of children with medically complex conditions, including rare disorders, depend on the Medicaid program for their health care coverage. The Advancing Care for Exceptional Kids (ACE Kids) Act is legislation that was signed into law in 2019 and will begin to be implemented in October 2022.

Read more about the ACE Kids Act

Rare Disease Day 2023

February 28, 2023 is Rare Disease Day. The day raises awareness and generates change for the 300 million people worldwide living with a rare disease, their families, and carers.

Learn more about Rare Disease Day 2023

Researchers will use AI to predict who may develop certain rare diseases

A team of researchers from University of Florida Health and Penn Medicine is using a set of artificial intelligence-powered algorithms called PANDA to find rare "zebras" in patient medical records and help patients affected by certain rare diseases get diagnosed and treated more quickly.

Learn more about this AI-powered research

RDDC and NORD Announce New Partnership to Help Identify Barriers for Rare Disease Patients and their Caregivers

The new initiative seeks to identify gaps experienced by patients and caregivers in underrepresented communities along their rare disease diagnosis and treatment journey.

Read more on the NORD website

South Carolina Report Card from NORD

In the latest edition of NORD’s State Report Card we analyze all 50 states and Washington, D.C., on eight policy issues that impact the rare disease community.

Read more about NORD's South Carolina report card

Rare diseases on South Carolina Public Radio

This week Bobbi Conner talks with Dr. Charlie Strange about rare diseases. Dr. Strange is a Professor of Pulmonary and Critical Care Medicine at MUSC.

Listen to the interview