BILL ANALYSIS                                                                                                                                                                                                    Ó




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          |SENATE RULES COMMITTEE            |                       SCR 108|
          |Office of Senate Floor Analyses   |                              |
          |(916) 651-1520    Fax: (916)      |                              |
          |327-4478                          |                              |
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                                    THIRD READING


          Bill No:  SCR 108
          Author:   Monning (D), et al.
          Introduced:2/12/16  
          Vote:     21  

           SUBJECT:   Rare Disease Day


          SOURCE:    National Organization for Rare Disorders


          DIGEST:  This resolution proclaims February 29, 2016, as Rare Disease  
          Day in California.
          ANALYSIS:  This resolution makes the following legislative  
          findings:


          1)There are nearly 7,000 diseases and conditions that are  
            considered rare, each affecting fewer than 200,000 Americans,  
            according to the National Institutes of Health.  While each of  
            these diseases may affect small numbers of people, rare  
            diseases as a group affect almost 30 million Americans.


          2)Individuals and families affected by rare diseases often  
            experience problems such as diagnosis delay, difficulty  
            finding a medical expert, and lack of access to treatments or  
            ancillary services.


          3)While the public is familiar with some rare diseases, many  
            patients and families affected by less widely known rare  
            diseases bear a large share of the burden of funding research  
            and raising public awareness to support the search for  
            treatments.








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          4)Residents of California are among those affected by rare  
            diseases because nearly one in 10 Americans have rare  
            diseases.


          This resolution proclaims February 29, 2016, as Rare Disease Day  
          in California, and provides that every year thereafter the  
          Legislature shall recognize Rare Disease Day in California on  
          the last day of February.


          FISCAL EFFECT:   Appropriation:    No          Fiscal  
          Com.:NoLocal:    No


          SUPPORT:   (Verified2/22/16)


          National Organization for Rare Disorders (source)
          International Pemphigus Pemphigoid Foundation


          OPPOSITION:   (Verified2/22/16)


          None received





          Prepared by:  Jonas Austin / SFA / (916) 651-1520
          2/24/16 15:59:37


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