Rare Disease News

2015 Portraits of Courage Honoree, Tony Ferrandino

Published April 28, 2015 by NORD

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“I tell my story because it makes people realize how lucky they are in life, and hug their kids a little bit tighter at night.” These are the courageous words …

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2015 Portraits of Courage Honoree, Laura Crandall

Published April 27, 2015 by NORD

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Laura Crandall was suddenly and unexpectedly confronted with the death of her healthy toddler after a nap. She has bravely turned her loss into the greatest gain for this rare …

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2015 Portraits of Courage Honoree: Emily Argersinger

Published April 27, 2015 by NORD

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At just 13 years old, Emily Argersinger decided to climb the highest peak in the northeast, Mount Washington. She did this to raise awareness of Sturge-Weber Syndrome – for …

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Get to Know Portraits of Courage Honoree, Devin Alvarez

Published April 26, 2015 by NORD

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Devin Alvarez is a remarkable 18-year-old who has undergone 44 surgeries related to Sprengel Deformity, a rare disease in which the shoulder blade is displaced upward, causing skeletal and muscular …

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Running for Rare Diseases Takes On Boston Marathon

Published April 20, 2015 by NORD

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Talk about inspiring–today, members of the Running for Rare Diseases Marathon Team will pound out 26.2 miles in chilly temps while running the Boston Marathon on behalf of rare disease …

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Announcing the 2015 Portraits of Courage Honorees

Published April 13, 2015 by NORD

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On May 19, on one of the rare disease community’s biggest nights, we will honor the patients, leaders and innovators who are moving the community forward at NORD’s annual Portraits …

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Can Crowdfunding Help Cure a Rare Disease? Cure Black Bone Disease: Time Is Running Out.

Published March 27, 2015 by NORD

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Crowdfunding is a way of raising money to fund a specific project or fullfil a specific goal in a relatively short amount of time. It involves asking a large number …

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Rare Disease Day 2015 was the biggest and most impactful yet!

Published March 20, 2015 by NORD

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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 & recap:Together, we planned and …

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FDA Commissioner on Medical Product Innovation

Published March 17, 2015 by NORD

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FDA Advances Medical Product Innovation By: Margaret A. Hamburg, M.D. As posted on March 17, 2015 by FDA Voice On March 10, I had the pleasure of appearing with my colleague …

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NORD’s Paul Melmeyer Authors Piece in NCC Collaborator about State-Based Advocacy

Published March 16, 2015 by NORD

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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 Center …

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