What if you could walk into your next check-up with a personalized NF1 checklist, and your doctor had one too? At the NF Network's "Breaking Down Barriers to NF1 Care" webinar, Dr. Vanessa Merker of Mass General revealed, for the first time anywhere, whether My NF Guide makes that difference. The early results for adults are encouraging.

Why it matters

Most people with NF1 in the US don't get care at a specialized NF clinic. NF clinics reach only about 29% of people with NF1 each year, and registry participants live an average of 61 miles from the nearest clinic. People who miss NF clinic care are also less likely to get the screenings NF1 guidelines recommend.

My NF Guide was built with patients, parents and primary care doctors to help close that gap, by bringing NF1 guidelines straight to the doctor you already see.

What you'll learn in the webinar

Who is most likely to miss out on NF clinic care, and why

How My NF Guide turns NF1 guidelines into a checklist for you and a matching letter for your doctor

What happened when nearly 300 adults and parents tested it in a nationwide, fully virtual trial

The first results for adults, and what's coming for children

How to join the new My NF Guide PEER study, which adds educational videos and a peer navigator

The webinar also features Dr. Paul Moots on how many people in the NF community take part in research, and why it matters.

Be among the first to hear the results, straight from the researcher who led the study. Watch "Breaking Down Barriers to NF1 Care" on the NF Network YouTube channel, then share it with your family and your primary care doctor.

Watch the full webinar

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