We are most grateful to Cheryl Fields for her very hard work in contacting many resources in preparation for the Rare Disease Day events that are to be held in Washington DC on February 29th (in only 5 days). Cheryl will be setting up and operating a table for MEBO Research in this event, and is hoping many people in our community go visit her there.
Cheryl received the email instructions below from the Senior Health Scientist Administrator of the Office of Rare Diseases Research, National Center for Advancing Translational Sciences (NCATS), NIH , for table exhibitors at Rare Disease Day at NIH. For those attending, here is a copy of this email so that you will know where Cheryl will be:
When you arrive at the NIH Clinical Center please look for the Office of Rare Diseases Research table. We will have a listing of the table assignments. The tables will be arranged in the South Lobby of the Clinical Center (Building 10). The NIH Campus Shuttle has a stop on the south side of the building. If you arrive at the North Lobby, there will be directional signs directing you to Masur Auditorium. The South Lobby is around the corner and down the hall from Masur. The tables will be ready for you by 7:30 am. Please allow sufficient time in the Visitors Gateway Center to go through security. The tables will be approximately 3’ x 6’ and there will be two chairs with each table. The exhibits should stay up, when possible, through at least the afternoon break. You should take the exhibits down by 6 pm.
While we don’t require you to stay with the exhibits all day, we do hope that you maintain a presence there during the breaks (morning, afternoon, and lunch). We are looking into arranging monitors for the lobby so that people can watch the live video stream while still at the tables and posters.
Senior Health Scientist Administrator
Office of Rare Diseases Research
National Institutes of Health / NCATS
Our most sincere gratitude goes out to Cheryl for her hard work in representing MEBO Research in such a powerful way by not only doing the video on Trimethylaminuria, but also in setting up a table at this event.
María
María de la Torre
Founder and Executive Director
A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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1 comments:
So pleased to see someone doing this, great attitude cheryl. Im really proud!!