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2015 Inhibitor Track Presentations

At HFA, a core value is listening to the community’s voice – and the inhibitor community has spoken loud and clear that more in-depth, higher level education was needed for those who are dealing with a long-term inhibitor.

With that in mind, an advisory committee began meeting in 2013 to plan an agenda for a dedicated inhibitor track at the HFA Symposium. The 2015 Inhibitor Track agenda was based on feedback from the summer 2013 survey and from feedback following the 2014 Inhibitor Track .

While the track was closed to inhibitor patients only during the Symposium, HFA is pleased to provide access to the presentations by the speakers. Please click on each topic below to view the slides from each educational session.

Topic

Description

Speakers

Promising Research & Products for Inhibitors

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Those living with an inhibitor for an extended period of time know that new developments in research and treatment happen slowly over a period of years. In this session, a leading researcher and hemophilia physician will discuss some of the most promising research on the horizon for those with inhibitors: the differences in new bypassing agents in development, the use of recombinant porcine factor VIII, the role of longer acting factor products in tolerization and the advent of new, more sensitive testing in inhibitors.

Shannon Meeks, M.D

What? Me, Worry?!

View a similar version of this presentation HERE.

With the diagnosis of an inhibitor comes the bleeds, the pokes, immune tolerance, managing family, school or work life, and the insurance woes – even the strongest person can find themselves fraught with worry and anxiety. This session will explore how worry and anxiety can affect the patient with an inhibitor and the caregiver, as well as discuss the role of Post Traumatic Stress Disorder (PTSD) in the chronically ill.

Dave Robinson, LMFT, Ph.D.

Reduce Inhibitor Development (RID) Update

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RID (Reduce Inhibitor Development) was established in 2013 by a mother and her son, who has a long history of hemophilia with inhibitors, with a vision of reducing inhibitor development. In a short period, RID has established itself in the inhibitor community as a bounty of information about pending research and the need for more surveillance, better product labeling, increased research and evolving treatment protocols. RID founder, Debbie Porter, will share more RID’s efforts, a top ten list of the findings RID views as the most promising and will leave the audience with a call to action to be advocates and voices within the inhibitor and greater hemophilia community.

Debbie Porter

Past, Present & Future of Inhibitor Prevention & Treatment: Panel Discussion

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A panel of leading medical providers and community members will answer questions from the audience from previous sessions and explore the path of inhibitor treatment over the last several decades and discuss what needs to be done in the future to prevent and treat inhibitors

Chris Walsh, Ph.D, MD
Shannon Meeks, MD
Mike Soucie, Ph.D
Sue Geraghty, RN
Dave Robinson, LMFT Ph.D.
Debbie Porter

To view the presentations from the 2014 Inhibitor Track, please clickhere.

 

 

Assisting and Advocating for the Bleeding Disorders Community