The complexities of Diagnosing and Treating a Rare Disease.

The Paid Leave Podcast

The last day of February is Rare Disease Awareness Day. You may not know much about rare diseases, but they do affect 1 out of 10 people across the world, and half of those are children. There are more Americans (30 million) who have a rare disease, more than all the people who have either HIV, heart disease or stroke.
Having a rare disease can be a long and frustrating road for the patient and the family, with the average diagnosis taking 5 years or more. Rich Horgan is the founder and CEO of Cure Rare Disease in Woodbridge Connecticut. He founded the company after his brother Terry was born with a rare disease, and there was no known cure. Rich talks about joining forces with scientists at Yale and other hospitals and working with clinicians and the FDA to try to create a drug to help his brother and other people fighting a rare disease. Rich talks about his choice to be in Connecticut, and how CT Paid Leave plays a strategic role in helping patients and their caregivers during this tough diagnosis to possible clinical trials and treatments.
To find about more about Rich Horgan and Cure rare Disease: Cure Rare Disease
Rare disease at the National Institute of Health: Home - Genetic and Rare Diseases Information Center (nih.gov)
Rare diseases at Yale: Rare Disease Research at Yale: Learn about our research and help us raise awareness. < Yale School of Medicine
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