UDN

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4th of October 2017

The Undiagnosed Diseases Network at ASHG 2017

The Undiagnosed Diseases Network will be at the American Society of Human Genetics (ASHG) Annual Meeting in Orlando, Florida from October 17-21, 2017. Information about the UDN will be available at the NIH Common Fund booth (#952) and the NHGRI booth (#855) during exhibit hours. Click here to view a printable list of UDN presentations. […]


11th of April 2017

My sibling has special needs: a Q&A

Introduction Emily Glanton, a genetic counselor and project manager at the UDN Coordinating Center at Harvard Medical School, recently sat down with 10-year-old Aleah Smith and her father Chad 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. […]


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 […]


3rd of June 2016

UDN Webinar hosted by NORD

Speakers: Katrina Dipple, MD, PhD Principal Investigator at the UDN UCLA Clinical Site Professor in the Departments of Human Genetics and Pediatrics at the University of California, Los Angeles (UCLA) Erica Hines UDN Participant at Duke University Medical Center Vandana Shashi, MD, MB BS Principal Investigator at the UDN Duke Clinical Site Professor in the […]


1st of October 2015

Shining Light on My Sister’s Journey to Diagnosis

Many rare diseases, such as relapsing polychondritis , spinal muscular atrophy , opsoclonus myoclonus syndrome , and sarcoidosis , are often difficult to diagnose. In many cases, patients like my sister, Carolyn, are undiagnosed for many years with no answers. Here is her journey to diagnosis and my motivation to raise money for the UDN Patient Assistance Fund. Fall of 1983 – Spring of […]