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Dear Friends­—

One of our guiding principles since our founding has been to provide the tools and education patients and their families need to make informed decisions about their bleeding disorder. This annual special edition of Dateline Federation is a product of our focus on that principle. We hope you find this tool helpful in your journey navigating treatment options and emerging therapies and a conversation starter for you and your medical providers. 

It was 17 years ago when I was choosing a treatment option for my newborn son with severe hemophilia A. The overwhelming feeling remains vivid. It was a confusing and scary process, despite having wonderful support from the staff at our local Hemophilia Treatment Center. I was a mom, unsure of how to even spell hemophilia at that point, just wanting to make the right call for my baby’s health. But, I didn’t know what questions to ask, what specifics to consider or even what our options were. At that time, little did I know that the number of treatment options for bleeding disorders would nearly double before my son even graduated high school and that novel treatment options beyond a recombinant clotting factor would become readily accessible.

As patients, we have the right to know our options. But it is our responsibility to educate and empower ourselves about our disorder. From our community’s history we know that patients and their families look to advocacy organizations such as HFA to provide the facts and information needed. HFA remains committed to being a trusted source of information for you. Furthermore, we are steadfast in our commitment to ensure a safe blood supply and transparency around treatment options and their efficacy. 

We’re continually evaluating the educational content we produce, always looking for ways to improve the resources we create for families. This product guide and list of emerging therapies has evolved over the past five years in an effort to create a tool that is useful. Our team is currently exploring ways to dive deeper into the topics you see in these pages, including an overview of products by disorder, access issues in insurance coverage and a look at the future of gene therapy and other new novel treatments.

As always, we want to hear from you to know if these are topics you want us to focus on, with the possibility of HFA hosting a multi-day online event focused on treatment options. What do you think is missing from the current tools and resources available to you and your family around treatment options and emerging therapies? Who do you want to hear from: doctors, researchers, manufacturers? Contact us at info@hemophiliafed.org; we’d love to hear from you!

Our legacy as a community of informed, engaged, educated and empowered advocates demands we always continue to gain the knowledge we need to move forward toward improved treatments and outcomes for everyone.
Let this resource be a launching point for you.

Sonji Wilkes

Hemophilia Mom

VP, Policy & Advocacy


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