Global Impacts of Rare Disease Day for Patients With Neurologic Disorders: Jill Morris, PhD


The program director in the division of Neuroscience at the National Institute of Neurological Disorders and Stroke provided context on the importance of Rare Disease Day and strides made over the years. [WATCH TIME: 5 minutes]

WATCH TIME: 5 minutes

"One of the great benefits [of the event] is the socializing that occurs between the advocacy groups. They can bond over what they’ve experienced, but also learn from each other. Some of the newly formed advocacy groups for ultra-rare diseases can learn from the well-established groups. I’ve found this community to be very collaborative."

Through the improvements in research and expansion of genetic testing, the number of identified rare neurologic conditions has grown tremendously over the past decade. Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease and comprised of more than 300 million affected people worldwide. The globally-coordinated movement is observed on the last day of February, including leap years, which are considered the rarest day of the year.

In addition to advocacy organizations, institutions like the National Institute of Health (NIH) also partake in the awareness efforts. Each year, the NIH demonstrates their commitment to helping those with rare diseases through research, initiating mutually beneficial dialogue among the rare diseases community, and shining a spotlight on stories told by those living with the diseases, their families, and their communities. Jill Morris, MD, a member of the Rare Disease Day planning committee at the NIH, believes these groups of patients are among the most resilient and collaborative.

Morris, who serves as program director in the division of Neuroscience at the National Institute of Neurological Disorders and Stroke, sat down with NeurologyLive® in the weeks leading up to Rare Disease Day to discuss the importance of the global event and how the NIH plans to help. She spoke on the benefits of this day and how it brings several different communities of various sizes together. Furthermore, she spoke on the improvements in the identification and diagnosis of certain rare neurologic disorders and how success stories should continue to fuel those within the rare disease community.

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