Lasting Impressions Coffee NF Research & Advocacy Hub

Knowledge, connection & community

Understand NF.
Find support.
Take action.

Trusted, patient-friendly resources to help you learn about Neurofibromatosis, connect with others, and make a difference.

Built for patients, families, advocates, and allies
Members of an anonymous patient community gathering, supporting one another, and planning together.

Start with your goal

What would you like help with?

Choose what you want to do, and we will take you directly to the most relevant part of the hub.

Learn about current NF research

Understand evidence and find trusted research resources.

Advocacy

Your experience can help shape better research and care.

  1. 1

    Choose your focus

    Care access, research priorities, transition to adult care, awareness, or community support.

  2. 2

    Tell the story with purpose

    Pair lived experience with a clear problem, the change you want, and who can help make it happen.

  3. 3

    Work with others

    Connect with patient groups, researchers, clinicians, and advocates already working on the issue.

  4. 4

    Protect your boundaries

    Share only what feels right. You never owe the internet your full medical story.