[Congressional Record (Bound Edition), Volume 161 (2015), Part 2]
[Senate]
[Page 2890]
[From the U.S. Government Publishing Office, www.gpo.gov]




                         SUBMITTED RESOLUTIONS

                                 ______
                                 

SENATE RESOLUTION 92--DESIGNATING FEBRUARY 28, 2015, AS ``RARE DISEASE 
                                 DAY''

  Mr. BROWN (for himself, Mr. Barrasso, Mr. Coons, Ms. Warren, Mr. 
Whitehouse, Mr. Wicker, and Mrs. Feinstein) submitted the following 
resolution; which was considered and agreed to:

                               S. Res. 92

       Whereas a rare disease or disorder is one that affects a 
     small number of patients - in the United States, typically 
     less than 200,000 individuals annually;
       Whereas as of the date of approval of this resolution, 
     nearly 7,000 rare diseases affect approximately 30,000,000 
     people in the United States and their families;
       Whereas children with rare genetic diseases account for 
     more than half of the population affected by rare diseases in 
     the United States;
       Whereas many rare diseases are serious, life-threatening, 
     and lack an effective treatment;
       Whereas great strides have been made in research and 
     treatment for rare diseases as a result of the Orphan Drug 
     Act (Public Law 97-414);
       Whereas the Food and Drug Administration has made great 
     strides in involving the patient in the drug review process 
     as part of its Patient-Focused Drug Development program, an 
     initiative that originated in the Food and Drug 
     Administration Safety and Innovation Act (Public Law 112-
     144);
       Whereas although more than 450 drugs and biological 
     products for the treatment of rare diseases have been 
     approved by the Food and Drug Administration, millions of 
     people in the United States have a rare disease for which 
     there is no such approved treatment;
       Whereas lack of access to effective treatments and 
     difficulty in obtaining reimbursement for life-altering, and 
     even life-saving, treatments still exist and remain 
     significant challenges for people with rare diseases and 
     their families;
       Whereas rare diseases and conditions include epidermolysis 
     bullosa, progeria, sickle cell anemia, spinal muscular 
     atrophy, Duchenne muscular dystrophy, Tay-Sachs disease, 
     cystic fibrosis, pulmonary fibrosis, many childhood cancers, 
     and fibrodysplasia ossificans progressiva;
       Whereas people with rare diseases experience challenges 
     that include difficulty in obtaining accurate diagnoses, 
     limited treatment options, and difficulty finding physicians 
     or treatment centers with expertise in their diseases;
       Whereas the rare disease community made great strides 
     during the 113th Congress, including the passage of the 
     National Pediatric Research Network Act (Public Law 113-55), 
     which calls special attention to rare diseases and directs 
     the National Institutes of Health to facilitate greater 
     collaboration among researchers;
       Whereas both the Food and Drug Administration and the 
     National Institutes of Health have established special 
     offices to advocate for rare disease research and treatments;
       Whereas the National Organization for Rare Disorders, an 
     organization established in 1983 to provide services to and 
     advocate on behalf of patients with rare diseases, remains a 
     critical public voice for people with rare diseases;
       Whereas 2015 marks the 32nd anniversary of the enactment of 
     the Orphan Drug Act and the establishment of the National 
     Organization for Rare Disorders;
       Whereas on February 25, 2015, more than 200 rare disease 
     advocates shared their stories on Capitol Hill on behalf of 
     the rare disease community and asked lawmakers to enhance 
     public policy to help rare disease patients;
       Whereas the National Organization for Rare Disorders 
     sponsors Rare Disease Day in the United States and partners 
     with many other major rare disease organizations to increase 
     public awareness of rare diseases;
       Whereas Rare Disease Day is observed each year on the last 
     day of February;
       Whereas Rare Disease Day is a global event, first observed 
     in the United States on February 28, 2009, and observed in 84 
     countries in 2014; and
       Whereas Rare Disease Day is expected to be observed 
     globally for years to come, providing hope and information 
     for rare disease patients around the world: Now, therefore, 
     be it
       Resolved, That the Senate--
       (1) designates February 28, 2015, as ``Rare Disease Day'';
       (2) recognizes the importance of improving awareness and 
     encouraging accurate and early diagnosis of rare diseases and 
     disorders; and
       (3) supports a national and global commitment to improving 
     access to and developing new treatments, diagnostics, and 
     cures for rare diseases and disorders.

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