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 […]
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 […]