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Now live! Explore the program for the upcoming 2024 Global Conference, taking place May 5-8, 2024.

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Dec. 7 at 2:30 pm ET | The Road Ahead for Improving Access to Testing and Treatment for Rare Diseases

Dec. 7 at 2:30 pm ET | The Road Ahead for Improving Access to Testing and Treatment for Rare Diseases

Genetic testing is critical to the diagnosis of many rare conditions. Genetic counselors play a vital role in helping patients and caregivers understand test results and providing them with the information needed to determine the appropriate next steps. Yet significant barriers remain in access to genetic tests and genetic counseling. This discussion will focus on policies to address these barriers, the key considerations in implementing them—including potential unintended consequences of interventions—and the areas where additional progress is most needed.

Moderator

Kate Sheridan
General Assignment Reporter, STAT News

Speakers

Donna Appell
Executive Director and Founder, Hermansky-Pudlak Syndrome Network

Annie Kennedy
Chief of Policy, Advocacy, and Patient Engagement, EveryLife Foundation for Rare Diseases

Tamar Thompson
Head, Corporate Affairs, Alexion/AstraZeneca Rare Disease

Bradford Wilson
Co-Founder and Chief Scientific Officer, IndyGeneUS AI

Published