How we help

Support that meets people where they are – and walks with them forward.

Living with neurofibromatosis (NF) can raise complex medical, emotional, and practical questions. Our role is to help individuals and families navigate those questions with clarity, compassion, and informed support.

Here’s how that support shows up in real life.

Direct Support & Connection

For many families, the Tumour Foundation of BC is the first place they turn. and often the place they return to.

Through our NF Health Line and direct outreach, we provide:

  • One-to-one support by phone, email, and online
  • Help understanding diagnoses, symptoms, and care pathways
  • A listening ear when things feel overwhelming or unclear

In the past year alone, we supported 500+ individuals and families, ensuring every inquiry was met with compassion and informed guidance.

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Advocacy That Makes Care More Accessible

Advocacy is a core part of how we help. We regularly support individuals and families by:

  • Helping them prepare for conversations with healthcare providers
  • Clarifying screening guidelines and treatment options
  • Supporting navigation through fragmented or unfamiliar systems

This advocacy is grounded in respect and collaboration, helping individuals feel informed and empowered. It often includes helping families understand the reasoning behind care decisions and supporting them in knowing what to ask next.

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Education That Empowers

We develop and share educational resources that respond directly to gaps in care and understanding. Recent examples include:

  • Breast Cancer Risk for Women with NF1, a first-of-its-kind BC resource addressing early screening needs
  • Management Guidelines for Adults with NF2-SWN, created to support both patients and physicians navigating complex care

These tools are designed to help individuals advocate for themselves, and to support healthcare providers with clear, accessible guidance.

Resource Centre

Community & Belonging

Isolation is one of the most common experiences shared by people affected by NF. We help by creating opportunities for connection through:

  • Annual symposiums
  • Small community gatherings and dinners across BC
  • Online spaces for shared learning and support

These moments of connection remind people they are not alone, and that their experiences matter.

Awareness That Opens Doors

Helping also means changing what others understand about NF.

Through province-wide awareness initiatives, including community campaigns and Shine a Light on NF, we bring NF out of the shadows and into public conversation.

Increased awareness leads to:

  • Earlier recognition
  • Better-informed providers
  • Greater community support

Why This Matters

Behind every call, resource, event, and conversation is a person seeking clarity, reassurance, or direction. Helping, for us, is not a single service. It is a continuum of care, advocacy, education, and connection, shaped by the real experiences of the NF community.

And it is how we ensure that no one affected by NF walks alone.