About the Hemophilia Federation of America (HFA)

HFA is a non-profit organization based in Washington D.C. that supports people with bleeding disorders. Founded in 1994, HFA creates a better quality of life for those living with hemophilia, von Willebrand disease, other blood factor deficiencies, and platelet disorders. They serve a community of patients and caregivers through patient education, services, and advocacy work across 50 US states and Puerto Rico.

HFA’s work includes a mixture of:

  • Collaboration with a range of national and state organizations, healthcare providers, insurers, patients and caregivers, advocating for therapies and health coverage that are both safe and affordable
  • Appearances before Congress and advocating with other state and federal agencies
  • Developing and providing training, tools and resources to the community

People living with bleeding disorders (and their caregivers) are faced with a daunting array of issues to navigate, once a diagnosis has been received. A diagnosis and its implications take considerable time to process, and research and financing of the treatment options available can be a draining task.

Providing Access to Community Knowledge and Support

While in-person support for people with bleeding disorders exists, the rarity of such conditions means that groups and their resources aren’t always easy to access. Those in rural areas may need to drive six to eight hours across their state—a big ask for anyone, but possibly more trying for anyone with a bleeding disorder.

HFA offers an online meeting place and a series of invaluable resources to everyone in the bleeding disorders community. One group in particular need of informational resources are new families: disorders are generally genetic, but it can be difficult to know that you are a carrier before you become a parent. Genetic mutations can also occur. The diagnosis can be a significant shock, and the tsunami of information impossible to keep up with initially.

HFA contacted Gomo partner LEO Learning with a view to creating courses that would allow families to discover topics at their own pace. It also wanted to extend similar materials to the wider community, and cover topics beyond the basics. These subjects include emerging therapies, clinical trials and non-medical concerns like employment rights, career and financial tips. This required an eLearning authoring tool that would ensure a consistent visual presentation of all courses, while being capable of delivering video and image assets that bring complex medical topics to life for a general audience. Gomo Learning and its responsive, review-anywhere nature, were quickly identified as the perfect fit.

“Gomo’s visual rhetoric capabilities made it an immediate frontrunner when we were selecting an authoring product. We expected the courses to be relatively media-heavy, while being accessible in places with slow internet connections, on any device. Our courses don’t just look great; there are lots of clever layouts and interactive parts that our learners love looking into.”
– Lori Long, HFA Institute Director

Making People’s Disorders Easier to Understand and Cope With

The LEO team’s design solution places an ongoing series of Gomo-authored online courses on HFA’s Learning Central, a new dedicated Moodle LMS implementation (available publicly at hfalearning.org). The series offers ‘basic’ and ‘scientific’ versions of all topics—written for layperson and professional audiences respectively, but available for all, with input from HFA’s subject matter experts.

Using Gomo allowed LEO and HFA to:

  • Work with multiple community members, expert doctors, nurses, social workers, and physical therapists to validate content, take feedback on required edits, and implement necessary changes
  • Provide access to adult HFA community members for the purposes of testing and feedback on early versions of the courses
  • Deliver fully responsive eLearning courses that can be viewed on any device
    • Courses were designed to be consumable within five to ten minutes—ideal for mobile viewing during downtime, such as waiting for an appointment.
  • Present video content, including LEO-produced animation work that helps explain microscopic processes that are typically difficult to visualize

Gomo’s flexible screen layouts allowed LEO’s learning designers to take a storytelling approach. The courses use Gomo’s vertical scrolling presentation to enhance story progression. Critically, community members were included in the content as guides, imparting their lived experience and insights and appearing in HFA’s imagery and video interview content. 

“We had a vision for what our learning platform could be, but limited manpower to realize that. LEO provided access to talented and visually creative designers and the flexibility of the Gomo Learning authoring tool. In combination, they have helped make a large volume of often quite technical information on bleeding disorders easier for people—who may be in a moment of crisis when they arrive—to assimilate. This helps us get across a simple message: you’re not alone.”
– Lori Long, HFA Institute Director

Results: Minds at Ease and Curiosity Piqued

On average, two to five new people arrive at the HFA Learning Central platform every week, seeking information about bleeding disorders and HFA’s work more generally. With 1,300 current users and 700 using the foundational ‘Bleeding Disorder Basics’ course alone, HFA has been pleased with the enthusiastic response from its community. The second most popular course, ‘Research and Clinical Trials’, has reached 160 users. The courses have even been a hit with veteran members, who have enjoyed exploring, refreshing their memory, and learning new information. One returning learner remarked that they’d previously been taught “everything about bleeding[...] but nothing about clotting”. 

HFA’s learners have no obligation to use the content, which is free to consume, and the team has only recently begun adding small quizzes and tracking results on pre- and post-testing. Learner enthusiasm has seen many people consume multiple short videos in a single sitting, with one remarking “I just kept doing one more bit, and before I knew it, I’d completed a few extra topics!”. Informal feedback is also overwhelmingly positive in general:

In reference to Bleeding Disorder Basics:

“What an outstanding project! The crispness, simplicity and direct access to specific knowledge is one of a kind and new for our community. I wish I had this when my children were born, I do believe my son would be alive today if I had access to this information when my twins were diagnosed in 1998. This gives voice to the questions patients and caregivers may have but may be too afraid to ask or may be getting advice that doesn’t feel right. This is empowering.” –Woman with Bleeding Disorder

In reference to Hemophilia Types:

“An excellent style of presentation.” –Gentleman with Hemophilia B

In reference to Joint Health:

“I took all three modules. I really like the flow, found the content engaging and liked the varied formats.” –Professional Evaluator

In reference to Current, New, and Emerging Therapies:

“I did the basic version and it’s really laid out well. I am not very familiar with this so the basic explanation was really good. I really liked the true/false questions. Overall ‐ really great job! –Mother of Son with Hemophilia

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  • 1,300 Learners across the United States
  • 700 Learners used foundational ‘Bleeding Disorder Basics’
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