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The best part of my job.
I love my job, but the best part of my job is connecting rare disease patients. I was hired in June of 2011 to manage RareConnect- NORD’s global, online communities project with EURORDIS. About eight...
View Article90 Degrees of Separation: Angles and Borders
In my previous blog post, I referred to the borders that people with rare diseases may confront when their illnesses have led them to another place, even if that other place is not literal but...
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30 Years After the Orphan Drug Act: It Still Takes Too Long for People with...
NORD recently posted the following question on its Facebook page: How long did it take you or a loved one to get an accurate diagnosis? We were stunned at the response. Within the first few hours, we...
View ArticleRecap of the FDA public workshop
Leleah Robinson, NORD’s Special Assistant to the Vice President of Public Policy, recently attended the FDA public workshops. This blog provides her insight into that event. In July 2012, President...
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Taking Action for ACD
Johnny Rista On February 20th, 2013, Eliza and John Rista of Huntersville, North Carolina were blessed with an uncomplicated pregnancy, and a healthy, full-term baby boy weighing 8 pounds and 6 ounces....
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Don’t Let Congress Go Home for the Holidays Without Taking Action on Newborn...
Before members of Congress pack up and go home for the holidays in December, there’s one important thing they need to do: Complete the reauthorization of the Newborn Screening Saves Lives Act. At the...
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Life is a Special Occasion
Alena Galan with her mother, MarciaPhoto Courtesy of Levi Gershkowitz Photography Alena Galan is a happy 16-year old girl full of life and wise beyond her years. She can light up a room with her...
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Holiday Reflections on this Amazing Community
Trevor Gavin As the holidays are in full swing, I cannot help but reflect upon the number of courageous families who are facing the most challenging times of their lives as they are impacted by rare...
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PMPRF President’s Statement on Stuart Scott’s Passing, and his Impact on the...
ESPN anchor Stuart Scott passed away last night at just 49 years old after his 7-plus year battle with appendix cancer. Mostly Scott’s passing makes me feel for his daughters, his family, his...
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