Published July 14, 2016 by NORD
The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), as the Senate announced it would not vote on its …
Continue reading “NORD Issues Statement as Senate Postpones Vote on Cures Legislation”
Read morePublished July 13, 2016 by NORD
Time is running out – today may be our last chance before September for anything to happen on the critical Zika package. This Friday, Senators will depart D.C. for their 7-week …
Continue reading “July 13 Day of Action: Last Chance for Zika Funding”
Read morePublished June 29, 2016 by NORD
Save the date for Sept. 21-22 for a nationwide day of action! Join NORD and 300+ partner organizations as we ‘rally’ for medical research as part of the annual Rally …
Continue reading “Register: Rally for Medical Research Hill Day 2016, Sept. 21-22”
Read morePublished June 22, 2016 by NORD
NORD has recently become a member of a coalition of patient groups in Oregon seeking to reduce out-of-pocket drug costs for patients. The Oregon legislature recently created a Prescription Drug …
Read morePublished June 21, 2016 by NORD
Join us in Hartford, Conn. on October 8th! For the first time, NORD’s charity marathon team, Running for Rare, will participate in the Eversource Hartford Marathon. We are thrilled to have the team …
Continue reading “Join the Team: Running for Rare Takes on Hartford”
Read morePublished June 17, 2016 by NORD
The strength of the rare disease community is defined by the people in it, and rare dads are some of our strongest advocates. You are always there to try and …
Continue reading “Happy Father’s Day from NORD”
Read morePublished June 16, 2016 by NORD
NORD, the leading, independent advocacy organization committed to helping the 1 in 10 Americans with rare diseases, applauds the Senate for authorizing medical foods coverage in the National Defense Authorization …
Read morePublished June 7, 2016 by NORD
Today, June 7, join rare disease advocates around the country and tell your Senators to support the Senate Cures Legislation. This month is the last chance for Senate Cures to pass …
Continue reading “Today, Tell Congress We Need #CuresNow”
Read morePublished May 31, 2016 by NORD
RareAction continues to make strides around the country for the 1 in 10 Americans with rare diseases. In this version of the State Policy Legislative Tracker, there is an increase …
Continue reading “RareAction Network℠ Releases May/June State Policy Legislative Tracker”
Read morePublished May 25, 2016 by NORD
May 26, 2016 1:00 – 2:00 p.m. EDT A trip to the emergency room with a rare disorder can present challenges. For one, few members of the ER staff may …
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