Activities
The UDN celebrates Rare Disease Day 2016
Rare Disease Day, Feb. 29, 2016
February 29 was an emotional day for many of the genetics faculty and staff, the first event was held at the Texas Children’s Hospital Bridge connecting the clinics to the hospital and we had 4 booths which included 2 organizations with parents who wanted to help and initially encouraged us to plan these events. (Genetics clinic, UDN, Noonan and Turner syndrome booths). Many families, faculty and staff of the hospital stopped by the booth including one couple who were returning to the hospital for the first time to commemorate the date that their son had died of a rare genetic disease 25 years ago. They were amazed to see the Rare Disease Day banner and learn of the huge efforts being made on behalf of people with rare diseases.
The inaugural Rare Disease Day celebration for the community in Houston was held later in the afternoon at The Health Museum on Monday Feb. 29, 2016 was sponsored by Molecular and Human Genetics at Baylor College of Medicine and Texas Children’s Hospital in collaboration with the National Organization for Rare Disorders (NORD).
Members of 25 rare disease and support organizations hosted booths for 4 hours. Dr. Brendan Lee, Chair, Molecular and Human Genetics thanked the 258 attendees and members of the organizations and shared remarks about Rare Disease Day. Rare Disease Day proclamations signed by Houston Mayor Sylvester Turner and Texas Governor Gregg Abbott were displayed. Texas legislature is not in session at this time, but the legislative aide from State Senator Rodney Ellis’ office attended and presented a certificate of appreciation re. Rare Disease Day efforts.
Public relations personnel from Baylor College of Medicine, Texas Children’s Hospital and The Health Museum worked together and we had 4 interviews with the media (Univision in Spanish, Fox), and one story in the Houston Chronicle.
https://youtu.be/m4K6XzpkE7A 
https://youtu.be/zQ-hQ_d72BQ
http://www.fox26houston.com/news/98838756-story
https://www.youtube.com/watch?v=8AsWB5OToec-
Duke University:
Duke Making Strides to Identify Rare Diseases
Vanderbilt University UDN News Stories:
http://www.wsmv.com/story/31540565/undiagnosed-diseases-network-helps-patients-with-rare-conditions
