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Rare Disease Awareness

ITP is a rare disease, one of 7,000 different diseases each effecting fewer than 200,000 people in the US.  Because many rare diseases have similar goals, PDSA partners with the National Organization for Rare Disorders (NORD) to have a stronger advocacy voice.  Close to 25 million people in the US have a rare disease making this group a formidable force in bringing awareness to these conditions, advocating for additional research, and supporting policies that expedite treatment approvals.

Selected Actions:

Communicate with the FDA - PDSA staff and other rare disease support groups attended a NORD-sponsored meeting with the Commissioner of the Food and Drug Administration (FDA)

Work with the NIH - PDSA staff attends Rare Disease Day at the National Institutes of Health (NIH), learning more about the progress in understanding the causes of rare diseases and finding effective treatments.