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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