Group of smiling people who are living with various types of NF

“Studies show that Neurofibromatosis occurs in almost 1:2,500 people.

You are not alone.”

Join the conversation. Share your story.

About Us

The Neurofibromatosis Society of Nova Scotia has been launched as a way to connect Nova Scotians with the condition in hopes of providing the support that’s often found in meeting people who can relate. As anyone diagnosed with any of the three forms of NF know, it’s little heard of not only by the public, but also in the medical community. NFSNS has gained permission from the Children’s Tumor Foundation, one of the global leaders in NF research and support, to use any of their information on our website and pamphlets to ensure we are providing a reliable, sound source of information to patients and the community alike.

While our primary focus will be on providing a platform for support and accurate information, we will also fundraise in order to sponsor young adults aged 12-21 to attend a special NF camp held each summer in Salt Lake City where youth from all of the world come together to have fun, challenge themselves and soak up the support of being with NF peers, as well as to donate to research ongoing at The Friedman Lab at UBC.

We look very forward to meeting folks similarly motivated and in touching lives. To contact NFSNS, email

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Meet our heroes

Portrait of Natasha

Natasha’s Story

Natasha’s journey with NF began in highschool when a bump appeared on her leg. Through her experience, she looks forward to raising awareness about NF.

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Madeline and her mother, Christine

Madeline’s Story

Madeline inherited her NF from her mother, a shared condition that has brought them closer together, and closer to all who live with NF everyday.

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Portrait of Emily

Emily’s story

After initially dealing with her NF in somewhat of a “vacuum”, Emily launched the NFSNS to raise awareness about the disease, and to create an online community to foster dialogue and support.

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Portrait of Helen

Helen’s story

Coming soon!