The Coalition for Hemophilia B unveils initiative to elevate health literacy

As my beloved hematologist pointed out during my last hemophilia clinic appointment, my health situation is rare. I have at least two identified bleeding disorders: von Willebrand disease and hemophilia B. I’ve met others along my journey who have two disorders, too, but the situation is uncommon.

Given this status, treatment often feels like trial and error, with no way of knowing which disorder is causing what bleeding problem. I’m grateful for every day that is free of painful bleeds.

I’m also grateful for initiatives by the nonprofit community to enhance awareness and education for people with bleeding disorders. These resources weren’t available to me during my worst bleeding episodes in the 1970s and ’80s.

The Coalition for Hemophilia B has unveiled a dynamic initiative to elevate health literacy and foster mental and physical well-being within the hemophilia B community. They call the project the “B Education Hub.”

Learning more about The Hub

I was recently given a tour of The Hub via Zoom by the coalition’s program director, Erica Garber, and its director of community relations, Rocky Williams. The Hub currently has 184 members, according to Williams.

Garber followed up by answering some of my questions via email. Excerpts follow.

JL: What inspired the creation of The Hub?

EG: At all of our community events, we see and hear from our members a sense of connectedness and support that is so necessary. When people come together in a safe space surrounded by others who understand what they are living, there is a sense of ease, peace, and comfort that is hard to find [elsewhere]. We wanted to create a way to extend those experiences beyond the events. We also wanted to create a way to share expert knowledge, cutting-edge research, and essential educational content with those who cannot travel or are limited in the number of events they can attend in person.

What are the primary goals and objectives of The Hub?

We aim to increase health literacy within the hemophilia B community in an accessible, engaging way. By providing comprehensive and accessible resources in an interactive, resource-rich platform for B health literacy education, we aim to support patients in further enhancing their ability to ask questions, think critically, and navigate the healthcare system.

We also understand that a strong support network of trusted friends and community dramatically increases the quality of life for any person. This is an essential piece to everything we do.

How does The Hub foster community engagement among its members? The Hub aims to spark connection through conversation, education, and fun. We have many features that one might expect from other social platforms, like the ability to post questions, ideas, links, images, and videos that appear in a feed curated for each member based on their interests.

You can comment, cheer, and respond to each post, all from a dedicated app on your phone or computer. We have many subgroups, called community hubs, for a wide variety of affinity groups, such as parenting groups, nutrition groups, mental health groups, and age groups, to name a few. We host the virtual events you have come to expect from us now within the portal, [as well as] new livestream events all our members can tune in to with expert speakers, community challenges, and educational courses from within The Hub.

How does one get started using the Hub?

Getting started is easy. You and your loved ones ages 13 and up can apply to join at hemob.org/education. You must be either a diagnosed individual or a family member of someone with hemophilia B in order to join.

Thank you to Rocky and Erica for their hard work on The Hub. Together, let us celebrate this innovative stride toward a healthier and more connected future for the hemophilia B community.