BILL ANALYSIS                                                                                                                    �



                                                                  ACR 13
                                                                  Page  1

          Date of Hearing:   February 18, 2011

                             ASSEMBLY COMMITTEE ON RULES
                                Nancy Skinner, Chair
             ACR 13 (Huffman and Hill) - As Introduced:  February 1, 2011
           
          SUBJECT  :   Rare Disease Day.

           SUMMARY  :   Proclaims February 28, 2011, as Rare Disease Day.  
          Specifically,  this resolution  makes the following legislative 
          findings:  

          1)Diseases and conditions considered rare are those affecting 
            fewer than 200,000 Americans each; and, while each of these 
            diseases may affect small numbers of people, rare diseases are 
            serious and debilitating conditions that, as a group, affect 
            almost 30 million Americans.

          2)Rare diseases, such as Lou Gehrig's disease and Huntington's 
            disease, are relatively well known; but, many others are not 
            known at all by the public, making patients and their families 
            bear a large share of the burden for fundraising and research.

          3)Individuals and families affected by rare diseases often 
            experience a sense of isolation, difficulty in obtaining an 
            accurate and timely diagnosis, few treatment options, and 
            problems related to accessing or being reimbursed for 
            treatment.

          4)The National Organization for Rare Disorders (NORD) is 
            organizing a nationwide observance of Rare Disease Day on 
            February 28, 2011, to focus attention on rare diseases as a 
            public health issue.
           
          FISCAL EFFECT  :   None.

           REGISTERED SUPPORT / OPPOSITION  :   

           Support 
           
          BayBio
          BioMarin
          California Healthcare Institute (Chi)

           Opposition 








                                                                 ACR 13
                                                                  Page  2

           
          None on file.

           
          Analysis Prepared by  :    Anna McCabe / RLS. / (916) 319-2800