The Inaugural Rare Diseases Symposium at Wash U

On February 28th, Washington University held the Inaugural Rare Diseases Day Symposium at the Eric P. Newman Center in St. Louis, Missouri. Over 200 doctors, scientists, and clinicians arrived to hear speakers and view presentations on dozens of rare diseases. The goal of this event was to highlight rare disease research being conducted at Wash U and raise the profile of the seven thousand rare diseases afflicting hundreds of thousands of Americans.

Included among the speakers was Michele Herndon, Vice-President of The Mitchell and Friends Foundation. Michele described her own journey as the parent of a child with a rare disease, and the efforts we have made to connect families and research treatments for Mitchell Syndrome. She was also honored as the first-ever recipient of the “Excellence in Rare Disease Advocacy” award for her role in helping secure NIH funding for the Undiagnosed Diseases Network. The UDN is a nationwide organization of scientists that diagnoses rare illnesses—including Mitchell Syndrome, which was first identified in 2017. While the UDN’s government funding was set to sunset this year, Michele lobbied Senator Roy Blunt’s office to persuade the US Senate Appropriations Committee to give the UDN one more year of funding before it transitions to the non-profit sector.

Your support of The Mitchell and Friends Foundation has allowed us to connect with some of the most important players in the rare disease space. Through this growing network of parents and researchers, we are raising awareness of Mitchell Syndrome so that more children might receive a quicker diagnosis and have greater access to information and, hopefully, treatments. Awards are nice. Cures are better.

To help us reach our goal of $150,000 to jump start research into Mitchell Syndrome, visit mitchellandfriends.org/give.

-MRH (2/28/2023)