BILL ANALYSIS                                                                                                                                                                                                    �



                                                                      



           ------------------------------------------------------------ 
          |SENATE RULES COMMITTEE            |                   ACR 13|
          |Office of Senate Floor Analyses   |                         |
          |1020 N Street, Suite 524          |                         |
          |(916) 651-1520         Fax: (916) |                         |
          |327-4478                          |                         |
           ------------------------------------------------------------ 
           
                                         
                                 THIRD READING


          Bill No:  ACR 13
          Author:   Huffman (D) and Hill (D), et al.
          Amended:  2/28/11 in Assembly
          Vote:     21

           
           SUBJECT  :    Rare Disease Day

           SOURCE  :     Author


           DIGEST  :    This resolution proclaims February 28, 2011, as 
          Rare Disease Day.

           ANALYSIS  :    

           Resolution 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 
                                                           CONTINUED





                                                                ACR 13
                                                                Page 
          2

            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 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  :    Fiscal Com.:  No


          CTW:do  8/30/11   Senate Floor Analyses 

                       SUPPORT/OPPOSITION:  NONE RECEIVED

                                ****  END  ****