Bush Signs Bills Allowing Funds for Rare Disease Research, Creating New NIH Office

President Bush on Nov. 6 signed two bills (HR 4013 and HR 4014) that aim to bolster medical research on rare diseases, the AP/Long Island Newsday reports (AP/Long Island Newsday, 11/6). Rare diseases are defined as those affecting fewer than 200,000 people. Some 25 million people in the United States are diagnosed with "at least one" of the 6,000 known rare disorders, including Tourette syndrome; ALS, also known as Lou Gehrig's disease; and sickle cell anemia (National Organization for Rare Disorders release, 11/7). The first bill will establish an Office of Rare Diseases at NIH and also set up "regional centers of excellence" for research on rare diseases or medical conditions. The second bill allows for but does not allocate federal funds to be given as grants and "contracts" to develop drugs to treat rare diseases, the AP/Newsday reports (AP/Long Island Newsday, 11/6). Diane Dorman, vice president for public policy at the National Organization for Rare Diseases, said, "The bills authorize increased funding for both NIH and FDA research programs, but lawmakers still must approve the funds to finance them. So we'll be turning to ... the 108th Congress [for help] to ensure that the programs are fully funded in accordance with Congressional intent," adding, "Our work is still cut out for us" (NORD release, 11/7).