Who we are

Our website address is: https://nfcollective.org. The NF Collective is not a 501(C)3 or a registered organizations. We do not collect donations or have financials.

Privacy Statement

At NF Collective, we know privacy isn’t just paperwork—it’s personal. We’re committed to protecting your information and using it only in ways that support our mission: connecting and empowering the NF and schwannomatosis community.

What We Collect (and Why)

We collect only the info we need to:

  • Help you find support, doctors, and relevant resources.
  • Connect you with NF organizations that can best serve your needs.
  • Share updates about the NF Collective’s work, community events, and advocacy.
  • Build a stronger, smarter network for the entire NF community.

This may include your name, contact information, location, and (if you choose to share) your connection to NF1, NF2-related schwannomatosis (NF2-SWN), or non-NF2 schwannomatosis (SWN).

How We Use (and Share) Your Information

We use your information to support you directly—or to make sure you get connected to the right people who can.

That may include:

  • Sharing your info with other NF organizations that are members of the NF Collective, if it helps them serve you more effectively.
  • If you’re a physician or provider requesting to be listed on our site, we may share your submitted information with NF organizations in the Collective so they can promote your listing to their communities.
  • Aggregating anonymous data to identify needs, track engagement, or support advocacy efforts.

We do not sell your information. Not to marketers. Not to advertisers. Not to anyone who isn’t directly helping us serve the NF community.

Your Rights & Choices

  • Want to know what we’ve got on file? Just ask.
  • Want us to stop contacting you? One click on “unsubscribe” and you’re good.
  • Want your data removed completely? Say the word—we’ll take care of it.

Cookies

We use cookies to make our site smoother and easier to use. No spying. No weird ads. Just functional, helpful tech.

Security

We take reasonable steps to protect your info. And if something ever goes wrong, we’ll let you know.

Need to Reach Us?

We’re real people, not bots. Message us through one of our contact forms if you have any questions, concerns, or just want to say hi.

We’re here to build something better—together, transparently, and with trust.