How One Man with Cowden Syndrome is Redefining Advocacy and Awareness

By Evans Jona

National Press Foundation Rare Disease Reporting Fellow (2025–2026)
LONDON/MUTARE — At 43, Dave Hogan received a letter from his late mother that would change the course of his life. His mother had been diagnosed with Cowden syndrome, a rare condition affecting one in 200,000 people worldwide. A year before her death in 2015, she urged him to get tested. “I felt fine at the time, but after she passed, I realized I needed to know,” he recalls. Within three months of seeing a genetics counselor and doctor, he was diagnosed.

Cowden syndrome carries elevated risks for cancers, benign growths, developmental delays, and in many cases, autistic traits. “Some people seem not too badly affected, while others suffer severely,” Hogan explains. “A few of us can maintain full-time work; some can’t. It’s a spectrum.”

His diagnosis brought clarity but also new challenges. The medical system, while supportive, could not fully address the complexity of his condition. “Doctors don’t know enough about rare diseases, and that’s not necessarily their fault. Patients often know more than the doctors because we learn from support groups and patient communities in the UK, US, and beyond,” Hogan says.

Daily life with Cowden syndrome is a balancing act. Hogan experiences persistent leg pain, ongoing health monitoring, and social challenges. “Self-awareness has been key. It’s taught me my strengths and limitations and how to live with a rare condition,” he reflects. Stigma and misunderstanding are constant companions. “People often don’t understand or want to ask questions. Isolation is intense, especially right after diagnosis,” he says.

Hogan has channelled his experience into advocacy. He has run Facebook support groups, participated in family councils, and attended charity events. “Mental health must be treated with the same priority as physical health,” he emphasizes. He also highlights the financial and personal costs of advocacy: “Many patient advocates fund their own participation in events or take unpaid leave for clinical trials. Rare-disease advocacy isn’t easy, and it can be exhausting.”

He calls for healthcare systems to better integrate patient voices. “Doctors need to involve patients in workshops, town halls, and decision-making spaces. Patients should be at the table, not fighting to be heard,” Hogan insists. He stresses the importance of joined-up care: rare-disease patients often juggle multiple conditions, requiring communication across specialists.

Despite these challenges, Hogan’s outlook is grounded in hope. “If you can accept having a rare condition, that’s half the battle,” he says. “You need time to process emotions, understand your condition, and learn how to live with it.” His advocacy underscores the value of community, conversation, and shared experience.

Hogan’s work aligns with the vision of the National Press Foundation (NPF), which seeks to inform, connect, and inspire journalists covering complex health issues globally. While Hogan was not part of the NPF fellowship, his advocacy mirrors the goals of the programme: to amplify rare-disease voices, highlight gaps in care, and drive public understanding.

Through his work, Hogan embodies the resilience, insight, and persistence that NPF encourages in journalists and patient advocates alike. His story sheds light on the unseen and unrecognized struggles of rare-disease patients worldwide. “Resilience is continuous,” he says. “Some days it’s exhausting, some days it’s empowering. But speaking up, connecting with others, and demanding better care, those are the victories. That is how change begins.”

Hogan’s voice, steady and unshaken, joins a growing chorus of global advocates urging healthcare systems to see the unseen, name the unnamed, and act decisively on the suffering that has too long been ignored.
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Dave Hogan can be reached via email on: dsross2013@gmail.com