UDN

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Blog

11th of April 2017

My sibling has special needs: a Q&A

Introduction I sat down with 10-year-old Aleah Smith and her father—who is known to the UDN and rare disease community as “Chad the Dad”—to talk about Aleah’s experiences as a sibling of someone with special needs. Aleah’s little brother, Blake, is 7 years old and is undiagnosed. Q&A Q. Tell me about yourself—what is your […]


9th of March 2017

The Undiagnosed Diseases Network at ACMG 2017

The Undiagnosed Diseases Network will be at the American College of Medical Genetics and Genomics (ACMG) Annual Clinical Genetics Meeting in Phoenix, Arizona from March 21-25, 2017. Attendees can stop by Booth #437 to chat with UDN investigators and learn more about the study. UDN Speaker Presentations Thursday, March 23, 1:30 PM – 3:30 PM […]


28th of November 2016

Finding the New Normal

My name is Chad Smith, also known as “Chad the Dad.” My wife, Becky, and I are the proud parents of two wonderful children, Aleah who is eight years old, and Blake, who is five years old. Blake has a long list of medical challenges, which continue to plague his life. Throughout the past five […]


22nd of November 2016

Running for Rare Wraps Up 2016 Marathon Season with New York City Finish

On November 6th, 2016, 50,000 runners hit the pavement as part of the TCS New York City Marathon. Amongst these runners were nine members from the Running for Rare charity team participating to raise awareness for rare disease and support NORD’s Undiagnosed Patient Assistance Program. All Running for Rare marathoners are matched with a community […]