JC Muyl is the founder of MyRareData, an organization dedicated to helping rare disease patients navigate their challenges through digital tools.
Professionally, JC is a digital health expert with over four decades of experience and a significant focus on rare diseases in recent years. On a personal level, JC is an active volunteer for mental and physical disability causes.
Originally from Europe, he’s spent his career in the U.S., transitioning from startup operations to mentoring. Early in his career, JC grew a 30-person startup into a 1,400-employee global healthcare organization. Over the years, he has launched multiple business lines across the U.S. and globally, spanning diverse healthcare segments.
JC is committed to delivering financially sustainable digital health solutions for rare disease communities, empowering patient groups. He also sees substantial potential for AI in healthcare.
What Are the Key Challenges of Having a Rare Disease?
The low prevalence of rare diseases systematically places these families at a disadvantage. In the United States, a rare disease typically affects fewer than 200,000 people. This often results in years of diagnostic “odysseysâ€, with families visiting numerous doctors in search of definitive answers.
Due to the scarcity of medical professionals specializing in these specific conditions, many families affected by rare diseases find themselves taking matters into their own hands. They often become well-versed experts on their own conditions, navigating the complexities of their health challenges amidst a lack of treatment options.
The Power of Rare Disease online Communities
The journey of many rare disease patients into advocacy is inspiring. Many go from dire situations to hopeful ones. They are deeply willing to share, help others, and bring people together—even when the system is not welcoming to their challenges.
To collaborate, rare patients have benefited from the rise of online communities as meeting physically is difficult, especially since the pandemic. While building these communities is a gradual process and requires patience, their long-term impact is undeniable.
How Can AI Help With Rare Disease Care?
AI offers a new potential for rare disease patients. Its ability to process large amounts of information rapidly gives it many applications, such as literature review (scanning scientific literature on a specific topic) or drug repurposing (analyzing vast datasets to identify how existing medications could be effective against rare diseases). Agentic AI can help rare patients deal with administrative tasks such as fighting for reimbursement or organizing travel to their medical visits.
But while AI can provide much needed help its ‘black-box’ nature makes it hard to trust. So, as it gets implemented, it needs to address things like the authenticity of the sources, data privacy, patient consent and equitable monetization, to name a few.
Why Attend Our AI x Rare Disease Event at Berkeley?
This event will explore the potential of generative AI to benefit rare disease patients and seek to identify solutions for them. Attendees will participate in an innovative problem-solving session, working alongside experienced mentors from various fields, and gain invaluable knowledge from a panel of expert speakers.