The rare disease community has seen several policy wins in the past few months, some of which may have gone unnoticed. First, in November, Congress passed the National Pediatric Research Network Act as part of the PREEMIE Reauthorization Act. President Obama signed the measure into law on November 27th. (more…)
CAMBRIDGE, MA and DANBURY, CT—-Genzyme, a Sanofi company, and the National Organization for Rare Disorders (NORD) today announced the creation of a fund to pay for standard diagnostic testing for people with mysterious, undiagnosed medical conditions. The fund will help those who have applied to the National Institutes of Health (NIH) Undiagnosed Diseases Program but who cannot afford the… Read More
Despite the current focus on logistical problems associated with the rollout of the Affordable Care Act, we must not forget that this law includes some important insurance reforms that were desperately needed, such as: (more…)
NORD recently posted the following question on its Facebook page: How long did it take you or a loved one to get an accurate diagnosis?
We were stunned at the response. Within the first few hours, we got 200 replies and 20% of those who responded had waited 10 years or longer to get an accurate… Read More