#UndiagnosedDay Celebrates Undiagnosed Diseases Network (UDN)
“Solving Medical Mysteries Through Team Science” – UDN
Zarko’s Story: Genomic Medicine In Action
“Zarko Stanacev experienced years of mysterious debilitating symptoms. He applied to NIH’s Undiagnosed Diseases Network (UDN) and had his genome was sequenced and interpreted by a team including Dr. William Gahl at the U.S. National Institutes of Health. They found a mutation in the gene NLRP3, which causes abnormal inflammation throughout the body. After only one treatment with a medicine to dampen this inflammation, Zarko’s symptoms improved. Video was produced by 42 Degrees North Media for the National Human Genome Research Institute.”
In honor of #UndiagnosedDay on April 29th and RUN co-founder and Executive Director Gina Szajnuk joining UDN’s Participant Engagement and Empowerment Resource (PEER), RUN would like to support and raise awareness this for the Undiagnosed Diseases Network, a research study that is funded by the National Institutes of Health Common Fund. 
For information on the application process
Learn about PEER
Description
The UDN Participant Engagement and Empowerment Resource (PEER) is made up of participants and family members who have participated in the UDN. PEER members work with UDN researchers to improve the participant experience, connect families with each other, and share the UDN with others. To learn more about PEER, please email PEERudn@gmail.com.
April Updates:
Learn How the Internet Is Empowering the Rare Disease Community, an editorial prepared by UDN investigators for Mediaplanet’s Rare Diseases campaign. This editorial highlights how important it is for rare disease researchers, clinicians, and families to share information with each other.
Why Fruit Flies Are The New Lab Rats: These Quick-Breeding Insects Have Similar Genetic Cellular Functions as Humans, an essay by Stephanie Mohr, scientist and author of the recently published book First in Fly: Drosophila Research and Biological Discovery. In her essay, Dr. Mohr discusses the work of the UDN Model Organisms Screening Center at Baylor College of Medicine.
For real-time research updates, follow the UDN on Facebook, Twitter, and Instagram (new!)
Contact UDN:
Hours: 9am – 5pm ET (Mon-Fri)
Email: UDN@hms.harvard.edu
Phone: 1-844-746-4836
(1 844 Ring UDN)
Read about the Szajnuk’s Journey with the UDN
