More than 200 patient groups have sent a letter to congressional leaders urging them to not end the Orphan Drug Tax Credit as part of the recent tax bill proposals, which they claim would result in one-third fewer treatments for rare diseases.
When 3-year-old Gabby was born with a rare disorder called vanishing gastroschisis, her family knew they had to do everything to help their daughter get the best care possible; even if that meant moving far from their home and extended family.
The National Organization for Rare Disorders Rare Action Network (NORD RAN) recently released a report indicating that the majority of states are not meeting legislative solutions to reduce the impact of rare diseases, which affect approximately 30 million Americans.
Leaders with the Fibrous Dysplasia Foundation and the National Organization for Rare Disorders recently launched a new study with the goal of researching fibrous dysplasia/McCune-Albright syndrome (FD/MAS).
The National Organization for Rare Disorders (NORD) recently announced the three keynote speakers who are scheduled to present at the 2016 Rare Diseases and Orphan Products Breakthrough Summit Oct. 17-18 in Arlington, Virginia.
The National Organization for Rare Disorders (NORD) recently joined over 300 organizations on Capitol Hill in the Rally for Medical Research Hill Day on Sept. 22, urging leaders to raise funds for the National Institutes of Health (NIH).
The National Organization for Rare Disorders (NORD), an independent nonprofit organization that represents 30 million U.S. residents with rare diseases, recently received federal funds to help stop the Zika virus.
Leaders with the National Organization for Rare Disorders (NORD) recently published a new website that will improve the access that caregivers and people with rare disorders have to unapproved medicines.
According to a recent advocacy alert, a Rare Disease Commission bill in Illinois, H.B. 4576, has almost gained the necessary approval, which could provide more patients with an opinion in the state government.
NORD, the top independent advocacy organization dedicated to helping patients who have rare diseases, recently applauded the Senate for approving medical foods coverage in S. 2943, the National Defense Authorization Act for fiscal year 2017.
Leaders with the National Organization for Rare Disorders (NORD), the top independent advocacy organization dedicated to helping patients who have rare diseases, has named a new chairman of the board of directors: Marshall Summar.
The National Organization for Rare Disorders (NORD) recently released data about 20 rare disease patient groups that are part of the organizations’ natural history studies, a branch of its cooperative agreement with the FDA.