The following statement was issued today by Peter L. Saltonstall, President and CEO of NORD, following the release of the second discussion draft by the House Energy and Commerce Committee for its 21st Century Cures initiative:
The second discussion draft of the 21st Century Cures initiative released today includes a number of encouraging ideas on how to advance the development of new medical therapies. The Committee and its staff deserve praise for efforts to bring these ideas together and for their months of work to make this a collaborative and transparent process.
We are encouraged by many of the ideas included in the second discussion draft. Since the initiative was launched one year ago, NORD has advocated for several provisions included therein, including incorporating the patient perspective through the patient-focused drug development initiative, developing registries of natural history data of rare disease patients, increasing transparency in the expanded access process, and increased funding for NIH, among others.
Nothing is more important to the rare disease community than providing an environment conducive to the development of new therapies and access to them. We will conduct a thorough evaluation and will continue to work closely with the Committee and members of the House and Senate as legislation moves forward.
Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)