Newborn Screening: Pompe disease added to recommended uniform screening panel
Really big news: Pompe disease has officially been added to the recommended uniform screening panel for each state’s newborn screening programs. Read the official letter from Health & Human...
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Rare Disease Day 2015 was our biggest and most impactful yet!
Rare Disease Day 2015 Recap & Highlight Reel The final 2015 State House Event took place yesterday. Now that all of the numbers are in, take a look at (and share!) this year’s highlight reel &...
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NORD’s Paul Melmeyer Authors Piece in NCC Collaborator about State-Based...
NORD’s Assistant Director of Public Policy, Paul Melmeyer, authored this great piece (below) in the March 2015 issue of the NCC Collaborator, the monthly publication from the National Coordinating...
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NORD Supports Rare Disease Advisory Council Legislation
A few members of the community have brought a social media conversation to our attention that inaccurately describes NORD’s involvement in state-based Rare Disease Advisory Councils. Because the...
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Physicians are Seeking Rare Disease Information
Recently, NORD’s partners at Frontline Medical Communications (FMC) shared the results of a survey conducted among physicians who received a Rare Neurological Disease Special Report co-published by FMC...
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Get to Know Portraits of Courage Honoree, Devin Alvarez
“Courage is in my nature; it is the type of person I am,” explains 18-year-old Devin Alvarez. The young man speaks with such certainty that it is hard to believe he and doctors once thought he would...
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Mother’s Day: Celebrating Amazing Moms in the Rare Disease Community
Kristen Rilling is an amazing mom who, since losing her daughter, Fallon, has worked hard to help other families from experiencing what she and her family went through. Fallon was born on October 10,...
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FPWR and NORD Launch Global Prader-Willi Syndrome Registry to Accelerate...
Global PWS Registry Debuts as Part of Prader-Willi Syndrome Awareness Month Washington, D.C. and Pasadena, Calif.—May 4, 2015—The Foundation for Prader-Willi Research (FPWR) and National Organization...
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Action Alert: Support OPEN Act (H.R. 971)
Today, NORD is joining the Everylife Foundation, Genetic Alliance, Global Genes, and the rare disease community in voicing our support for the OPEN Act (H.R.971), and requesting its inclusion within...
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2015 Portraits of Courage Honoree: Cindy Abbott
In September 2009, a health sciences lecturer from California State University, Fullerton wrote to NORD with the following message: “I’m 50 years old. I’ve recently been diagnosed with an incurable...
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