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IN THIS ISSUE:

   2 Executive Corner                               HAPPENING HIGHLIGHTS
   4 Knowledge is Power                                Lest We Forget. HFA seeks
                                                       community help in honoring past . . . . . . . . . . . . . .  8
           HFA creates lifelong learning platform
           for patients and families                   American Medical ID. . . . . . . . . . . . . . . . . . . . . . . . . .  9

                                                       Have You Moved? . . . . . . . . . . . . . . . . . . . . . . . . . . . .  9

    6  Stemmed from Life Experience                 ADVOCACY PROFILE
   10                                                  Loud and Clear. Patient advocates hit
       Women with bleeding disorders                   The Hill to share their story. . . . . . . . . . . . . . . . . . . . 16
       find careers in science because                 Day on the Hill in Tennessee. . . . . . . . . . . . . . . . . . . 18
       of their disorders                              Welcome 2018 Summer Advocacy Interns. . . . . . . 19

       Letting them Fly                             POLICY PROFILE
                                                       Insurance strategy harms patients,
   11  An Experiment in Friendship                     leaving insurers collecting more. . . . . . . . . . . . . . .  20
   13
       Author brings reality of von Willebrand      SANGRE LATINA
       Disease to life through fictional character     Llego el Verano. Los Cuerpos Sanos
       middle school girls can relate to               de Verano Sangran Menos. . . . . . . . . . . . . . . . . . . .  24

       Project Calls                                ON THE HORIZON
                                                       Treatment optiosn widen with new and
   14  A Lesson in Understanding                       emerging science. The latest in antibodies,
                                                       gene therapy explained.. . . . . . . . . . . . . . . . . . . . . .  25
       Working relationship with teachers
       and other school staff leads to better       BEYOND OUR BORDERS
       educational experience                          From Devastation to Hope. Together We Care. .  26

   22  Bearing the Burdens                          MEMBER ORG SPOTLIGHT
                                                       HFA welcomes our newest member
       Data reveals menstrual, pregnancy and           organizations!. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  29
       hysterectomy issues in women with
       hemophilia A or B                            INSPIRING IMPACT
                                                       Annual charitable bicycle ride raises
28 Join HFA in the Marine Corps                        emergency funds. . . . . . . . . . . . . . . . . . . . . . . . . . . .  30
           Marathon October 28!                        Delves for Donors. . . . . . . . . . . . . . . . . . . . . . . . . . .  30
                                                       Crowd Funding made easy. HFA starts
                                                       Do-It-Yourself site to support fundraising . . . . . . . 31

       ON THE COVER. Danielle of Texas, sits in the space shuttle exhibit at the
       Great Lakes Science Center in Cleveland, which she visited with other teens while at Symposium this April.

       Growing up in Houston, she loves to visit NASA because of her interest in science. In high school she has an endorsement
       in STEM Science, which allows her to take college courses to work toward her dream of becoming a marine biologist.

       “We don’t have a lot of girl scientists and I think the world needs more,” the 14-year-old carrier of hemophilia said.

       She loves sea animals and looks forward to traveling the world to find new species with her friend,
       who also wants to be a marine biologist. Photo credit: Gina Richards

	                                                   Summer 2018 | Dateline Federation	                                                  3
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