Rare diseases

According to the National Institutes of Health, there are approximately 7,000 rare diseases affecting between 25 and 30 million Americans. This equates to 1 in 10 Americans. We’ll learn about research in Maine that addresses rare diseases, as well as where patients and family members can turn for help navigating available resources and treatment.

Panelists:

Brian Denger, parent of a child with a rare disease

Thomas Reynolds, pediatric neurologist located in Scarborough; affiliated with Maine Medical Center

Cathleen ‘Cat’ Lutz, Vice President, Rare Disease Translation Center, The Jackson Laboratory

Resources:

NORD State Report Card | States Serving People with Rare Diseases

Rare Diseases; Children with Special Health Needs - Division of Disease Prevention - Maine CDC: DHHS Maine

Maine Elevates Rare Disease Voices, Establishes State Advisory Council - National Organization for Rare Disorders (rarediseases.org)

JAX strives to advance rare disease research and treatment options (biomaine.org)

Rare disease families and experts weigh in on how to best navigate the rare disease odyssey (jax.org)