Advancing Equitable Genomic Testing in Rare Diseases

In the Q3 2024 issue of Rare Diseases by Mediaplanet, Sharon Terry, CEO of Genetic Alliance and President of EspeRare, highlights the critical need for equitable, patient-centered solutions in rare disease care. “The urgency for equitable access to state-of-the-art genomic-based sequencing has never been more critical,” Sharon states. She passionately advocates for inclusive research and collaboration to address the unmet needs of underserved populations. Sharon’s vision extends through iHope Genetic Health, a groundbreaking Genetic Alliance program offering free genome and exome sequencing for children suspected of genetic diseases, providing accurate diagnoses for better follow-up care.

You can read the full article on page 8 posted here.

To find out more about iHope Genetic Health click here.