NORD President and CEO Peter L. Saltonstall expressed disappointment “on behalf of the one in 10 Americans with rare diseases, most of whom are still waiting for a cure” at the US Senate’s decision to postpone a vote on the Senate Innovations for Healthier Americans Initiative until at least September.
“This vital package includes billions of dollars to spur medical innovation that would help the rare disease community,” Mr. Saltonstall said in a statement released by NORD, including needed funding for medical research at NIH and to accelerate product review at FDA, as well as for special initiatives such as the Cancer Moonshot headed by Vice President Joe Biden.
“Most pressing,” Mr. Saltonstall added, “is the reauthorization of the Rare Pediatric Disease Priority Review Voucher program, currently set to expire at the end of September.” NORD has been a strong and consistent advocate for that program, which encourages the development of therapies for rare pediatric diseases.