How to Get Involved: Supporting the NF Community

When you first hear about Neurofibromatosis, you might wonder, “How can I help?” The truth is, you don’t have to be a scientist or doctor to make a difference. There are simple yet powerful ways you can support people living with NF and push for a brighter future.

1. Raise Awareness

The first step is making sure people know NF exists. Share educational posts, talk to your friends and family, and join awareness events like NF Awareness Month in May. The more people know, the more support the community gains.

2. Fundraise for Research

Breakthrough treatments are only possible with funding. You can:

• Host a small fundraiser at school or in your neighborhood

• Start a social media fundraiser for a birthday

• Donate to organizations like the Children’s Tumor Foundation

3. Volunteer Your Time

Join NFSA events, help organize awareness campaigns, or even contribute your skills (writing, design, social media) to nonprofits working on rare diseases.

4. Advocate for Change

Write to local representatives about supporting rare disease research funding. Every voice matters in creating policies that help the NF community.

5. Be a Friend & Ally

Sometimes the most meaningful support is simply being there for someone with NF. Listen, offer encouragement, and help them feel seen and valued.

Small Actions, Big Impact

  You don’t have to change the whole world to make a difference. Even one conversation can lead to more awareness, understanding, and hope.