Published April 27, 2015 by NORD
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 …
Continue reading “2015 Portraits of Courage Honoree: Emily Argersinger”
Read morePublished April 26, 2015 by NORD
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 …
Continue reading “Get to Know Portraits of Courage Honoree, Devin Alvarez”
Read morePublished April 20, 2015 by NORD
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 …
Continue reading “Running for Rare Diseases Takes On Boston Marathon”
Read morePublished April 13, 2015 by NORD
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 …
Continue reading “Announcing the 2015 Portraits of Courage Honorees”
Read morePublished March 27, 2015 by NORD
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 …
Read morePublished March 20, 2015 by NORD
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 …
Continue reading “Rare Disease Day 2015 was the biggest and most impactful yet!”
Read morePublished March 17, 2015 by NORD
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 …
Continue reading “FDA Commissioner on Medical Product Innovation”
Read morePublished March 16, 2015 by NORD
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 …
Continue reading “NORD’s Paul Melmeyer Authors Piece in NCC Collaborator about State-Based Advocacy”
Read morePublished February 28, 2015 by NORD
Rare Disease Day is here! Celebrated on the last day of February–the rarest day on the calendar–this is the one day every year when the world comes together to improve …
Continue reading “Today is Rare Disease Day 2015”
Read morePublished February 28, 2015 by NORD
The National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare disorders and official U.S. sponsor of Rare Disease Day® on February …
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