Published April 15, 2016 by NORD
Volunteer by definition is a person who voluntarily undertakes or expresses a willingness to undertake a service. The role of a Membership Manager at NORD is a very unique and rewarding one. …
Continue reading “A Special Thank You to Volunteers in the Rare Disease Community”
Read morePublished April 15, 2016 by NORD
This week, the Illinois House passed HB 4576. The House Bill seeks to establish a Rare Disease Commission that would give patients – many of whom are too young or …
Continue reading “Advocacy Alert: Illinois Edges Closer to Establishing Rare Disease Commission”
Read morePublished April 7, 2016 by NORD
Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day®. This is the one day that everyone comes together globally to …
Continue reading “Introducing the 2016 Rare Disease Day® Highlights Video”
Read morePublished March 15, 2016 by NORD
Running for Rare was named an Official Charity Partner of the 2016 TCS New York City Marathon, it was announced today by the National Organization for Rare Disorders (NORD). The …
Read morePublished March 11, 2016 by NORD
The Running for Rare marathon team will expand under new governance with the National Organization for Rare Disorders (NORD), the leading independent nonprofit representing all people with rare diseases and …
Continue reading “Running for Rare Marathon Team Expands Under NORD”
Read morePublished March 2, 2016 by NORD
“One day, I wish everyone dealing with a rare condition will have access to a treatment. I really hope you will enjoy reading these memories… and learn more about this …
Continue reading “NORD Founder Publishes Memoir Detailing Her Tireless Work as Parent-Advocate”
Read morePublished February 29, 2016 by NORD
On this day, join the 30 million Americans who are making the voice of rare diseases heard. Your participation on Rare Disease Day means more awareness and hope for 1 in …
Continue reading “Today is Rare Disease Day®”
Read morePublished February 24, 2016 by NORD
The following statement was issued today by Peter L. Saltonstall, President and CEO of NORD, on the confirmation by the U.S. Senate of Robert Califf, M.D., as Commissioner of the …
Continue reading “NORD Issues Statement on New FDA Commissioner Robert Califf, M.D.”
Read morePublished February 11, 2016 by NORD
“I want to shake up what people think is possible,” says Mary Kitlowski – “ both people with rare diseases, and people without. If I can make a difference by …
Continue reading “Running on Air for Rare Disease Day”
Read morePublished February 4, 2016 by NORD
Watch the global video for Rare Disease Day with your friends, family, and colleagues!
Read more
Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.
Please complete this form to access the requested resource.