From Camp to Capitol Hill, Jordan Howard Advocates for Hemophilia

Jordan Howard is wrapping up an eventful first year at the University of Georgia.

He’s a computer systems engineering major and a member of the National Society of Black Engineers and the Institute of Electrical and Electronics Engineers. Like many college freshmen, it was difficult for Howard to get used to living on his own, but not for the same reasons as most of his peers.

His parents weren’t around to remind him to take his medicine—administered through self-infusions—every 10 days. Walking around a large campus was tough and sometimes caused him to bleed.

Howard has lived with severe hemophilia B since birth. His older brother was diagnosed with the disease at about six months old. Howard says observing the difficulties his brother faced inspired him to get involved in advocacy work that recently took him to Capitol Hill.

His brother wasn’t screened at birth, Howard says, and eventually began to bleed into his joints.

Howard felt the need to do something for the rare disease community. He decided to become a Young Adult Rare Representative with the EveryLife Foundation, and he says the experience has helped him get more comfortable talking about his own disease and relating to other people with rare diseases. In February, Howard traveled to Washington, D.C. for his first-ever Rare Disease Week.

Jordan Howard (left) said it was “a great week” to meet with legislative correspondents for Georgia Senators Raphael Warnock and Jon Ossoff, and Representatives Barry Loudermilk and David Scott, and discuss potential legislation for the rare disease community.

This wasn't Howard's first time helping others with hemophilia. He has also worked as a counselor at Camp Wannaklot, a summer camp in Georgia for kids with hemophilia or other inherited bleeding disorders. Camp Wannaklot counselors help kids with their infusions and medication management, disease education, and more.

Jordan (left) is a camper-turned-counselor at Camp Wannaklot.

Howard says he'd tell anyone with hemophilia, or another rare disease, that educating yourself is the most important thing you can do. "You should be actively involved in your disease," he says.

Howard is already looking forward to Rare Disease Week in 2024.

"This was a fantastic opportunity to gain experience in patient advocacy, and I can’t wait for next year!"

Devin is ASGCT's communications manager.

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