Living with a rare disease shouldn't mean navigating it alone

There are over 7,000 known rare diseases, and they affect more than 300 million people worldwide. For most of these conditions, reliable information is scattered across medical journals, pharma press releases, government databases, and patient forums. Families piece together what they can, often late at night, often overwhelmed.

When it comes to clinical trials (which for many rare diseases represent the only path to new treatments), the situation gets worse. ClinicalTrials.gov is the definitive source, but it was built for researchers and regulators. The eligibility criteria are written in dense medical and legal language. A patient trying to figure out if they qualify often needs a medical degree just to parse the requirements.

I watched families spend hours reading through incomprehensible criteria, unable to find straight answers about their condition, unsure whether their current medications would disqualify them, and missing enrollment windows for trials that could have changed their lives. That felt like something I could help fix.

Trial Friend started close to home. Someone close to me lives with a rare disease, and watching that experience up close changed how I see this whole space. The late nights searching for answers. The doctor visits where you leave with more questions than you came in with. The feeling of trying to advocate for someone you love without the vocabulary to do it well. The trials you find by accident and wonder how many others you missed.

I spent 20 years in healthcare and pharma marketing on the other side of the table, building campaigns and watching how patient information gets shaped, filtered, and sold. I learned how the system works. I also learned what's missing from it.

Trial Friend is what I wished existed when our family needed it. Plain language. No data selling. No hidden agendas. Just the information patients and caregivers actually need, organized the way a person searching at midnight would want to find it.

To answer the question plainly, because it is the first thing I would ask: Trial Friend is built and maintained by one person. I'm Jason Hunter, an independent writer, and you can reach me directly at jason@trialfriend.com. I use AI tools to help research, draft, and check the site, and to keep every disease page current each day against primary sources, but every editorial decision on this site is mine and nothing is published without my review. The editorial standards spell out exactly how.

If it helps even one family find a trial they would have missed, or have a better conversation with their doctor, or just feel a little less alone in the search, then it's worth every hour it took to build.

Trial Friend is a rare disease information hub that covers the full journey, from understanding your diagnosis to finding the clinical trial that could become your next treatment. I maintain detailed pages for 204 rare diseases, each with medically sourced information about the condition, current FDA-approved therapies, drug pipeline updates, and medication conflict checking. The Drug Decoder covers 274 medications with mechanisms of action, side effects, administration details, key clinical trial results, and pricing context, all sourced from FDA prescribing labels and published research.

For patients already on treatment, interactive Treatment Arcs walk you through where you are in your treatment journey, what to expect next, questions to ask your doctor, and red flags to watch for, personalized to your specific medication and timeline. Drug comparison charts let you see how treatments stack up side by side. An AI chat assistant can answer questions about your condition and treatments, pulling from FDA labels, published trials, and treatment guidelines.

For clinical trials, I pull real-time data directly from ClinicalTrials.gov and make it understandable. AI reads through dense eligibility criteria and translates them into plain English. The Match Me tool scores trials against your profile. The medication conflict checker scans exclusion criteria against your current prescriptions so you know upfront whether a trial might work for you.

Some of today's clinical trials become tomorrow's approved therapies. Trial Friend is here for that whole arc: helping you stay informed about your condition, track what's in development, and find the trials that could make a real difference.

Trial Friend is an informational resource. It helps you understand your rare disease, explore treatment options, check medication conflicts, and find clinical trials, but I am not a medical provider, and nothing on this site constitutes medical advice. Always talk to your doctor or specialist before making any decisions about treatment or clinical trial participation.

The trial data on this site comes directly from ClinicalTrials.gov, which is maintained by the U.S. National Library of Medicine. It updates in real time, but trial availability can change quickly. A study that appears open today may close enrollment tomorrow.

If you find a trial that looks promising, your next step should be to discuss it with your care team. They can help determine if the study is appropriate for your specific situation and guide you through the enrollment process.