Participating in research is one of the most powerful ways you can help change the future for everyone affected by neurofibromatosis and schwannomatosis. There are many ways to get involved, from sharing your experience to participating in a clinical trial. Every contribution, big or small, helps move us closer to better treatments and a cure.

Why Your Participation Matters

When you participate in research, you’re not just helping scientists—you’re gaining access to specialized care, learning more about your own condition, and joining a community of people dedicated to making a difference.

Advance Our Understanding

Research is the key to understanding NF better. Your involvement helps fuel the discovery of new treatments and brings us closer to a cure.

Access Expert Care

Some studies may offer closer monitoring or additional testing, like MRIs, at no cost, giving you access to extra care and expertise.

How to Find Research Opportunities

Finding a study that’s right for you is easier than you might think. Here are a few ways to get started:

  • Talk to your doctor: Let your NF specialist know you’re interested in research. They are often the best source for studies you may be eligible for. If you need help finding a specialist, you can find NF care in your area.
  • Explore online registries: Websites like clinicaltrials.gov and researchmatch.org are great resources for finding clinical trials for neurofibromatosis and schwannomatosis.
  • Stay connected with us: We share research opportunities through our email updates and social media. Sign up to stay informed about new studies and developments.

Highlighted Active Studies –
Look for more at ClinicalTrials.Gov

NOTE: We do not list drug trials here.

Be Part of the Next Breakthrough

Your involvement can make all the difference. Join our community to stay informed about the latest research news and opportunities to participate.

Get Involved