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March 6, 2018
Rare Disease Day at National Institutes for Health (NIH), Bethesda, MD March 1st
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We were located at the Mauser Auditorium on the NIH campus. This exhibit was approved as a no cost exhibit. The exhibit was created using Google images. The theme was puzzle pieces and lost items. The exhibit was manned by myself and my wife. We stayed nearby at our son and daughter-in law’s to save on hotel costs. Meals and travel expenses were ours. Nothing charged to TGA Project2018 as we remain a grassroots volunteer community with a zero budget.
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The following list are some possible future collaborations as we continue to reach out for guidance and knowledge as we enter the health and rare disease communities. We have begun communications with several of this organizations this week upon returning home. We will update as items become more concrete in nature. The list is not in any order. Contact names and info not included at this time to save space.
US National Library of Medicine, Medical Subject Headings, www.nih.gov
Organization for Rare Diseases India www.ordindia.org
National Organization for Rare Disorders www.rarediseases.org
The next exhibit we are considering is April 20, 2018 in LA for the 2018 Brain Fair by the American Academy of Neurology. We have been approved for a complimentary 10 by 10 booth. There are some logistical items to work out, so we may not be able to attend.
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After that the next event we have been invited to is the World Orphan Drug Congress USA 2018 Expo in Washington, DC April 25-27. This may not include our exhibit as those details are being worked out. This is not a free event. I have found out that a single 3 day conference ticket is $3500.00. We may attend as their guests to network and attend workshops without displaying our exhibit.
A major research institution has contacted us by email regarding a future research project on TGA. There may be significant news about this in the future. If this can be arranged, we will need to set-up a sign-up list as communication will be imperative and HIPPA confidentiality secured.
Rare Disease Day Update 3-6-18
TGA Tymes March 2018
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