Page 5 - HFA Dateline 2022 Special Edition

EXECUTIVE CORNER

HI FRIENDS,

HFA has long been committed to bringing you and your families the resources, tools and education you need to
make informed decisions about bleeding disorders. This annual special edition of Dateline Federation is one of those
valuable resources. We hope you find this tool helpful as you navigate treatment options and emerging therapies and
that it might serve as a conversation starter for you and your medical providers.

I didn’t get diagnosed with von Willebrand disease (VWD) until my teenage years during an unexpected emergency
surgery. After receiving my bleeding disorder diagnosis, like many of you can probably relate, it answered so many
lingering questions I had, like why I was always getting bruises, had dangerously heavy menstrual periods, etc.

But it was also a hard transition for me and my family. My mom had undiagnosed VWD, and one of my
sisters was diagnosed as well. Thankfully, I got connected with the community through the Bleeding Disorder
Foundation of Washington, which is my proud home and local member organization. I am so grateful for all the
opportunities to learn, grow and lead with the incredible programming and investment of the HFA programs
and my local member organization.

I got involved more directly with HFA after being asked to be a board member in 2017. It has been so fun to get to
know more of the national community and connect with individuals and families from all across the country.
The programming and education that HFA offers provides me with confidence and hope as I’m now entering into
conversations about how my bleeding disorder impacts my future family. HFA is so much more than an organization
for people with bleeding disorders. It is for me, as a woman, future mom and community member, a place of family
and community strength that offers hope, assistance, educational tools and advocacy to everyone.

The Latest Products and Treatments
As people with bleeding disorders and parents of children with bleeding disorders, it’s important we stay updated on
the latest products and treatments available, that we learn how to speak up and advocate for our families and that we
continue to empower ourselves and our community about bleeding disorders.
HFA is right there with you. This organization that I love—and have been involved with for several years—is committed
to providing you with the most updated information available. HFA is also committed to continuing to ensure a safe
blood supply and providing transparency around treatment options.

In this special product guide, you will find detailed charts listing all the current products and emerging therapies.
You will also find important educational articles about the promise of gene therapy, the future of prophylactic factor
infusions, how clinical trials work, the drug approval process, how informed consent works and the drug recall process.

We hope you find these articles valuable and consider this guide an ongoing resource to pull off your shelf (or read
online at www.hemophiliafed.org/home/news-stories/dateline) whenever you have questions. And, of course, the
HFA team is always available to answer your questions as well.

Let us know how we can help—or what tools and resources you’d like to see in the future.
Email info@hemophiliafed.org. We’d love to hear from you!

Allie Ritcey

Chair, HFA Board of Directors

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