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Talking about Neurofibromatosis A Guide for Teens

07 August 2019

Talking about Neurofibromatosis A Guide for Teens

A new incredibly informative and useful brochure, aimed at helping teens, provided through the generosity of the Doris and Donald Schnuck Fund for Children in Need and the St. Louis Children’s Hospital Foundation has been released and you can find it by clicking on the button below. 

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Take Part in Dexter’s NF Documentary Project

Dexter shares his motivations for taking on his NF documentary project, find out how you can get involved.

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Shae’s Story

Read Shae's journey with NF and how she is taking life head on.

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24 Hour Marathon – Three Brothers Running for the Fourth

Toby, James & Alex take on an epic 24 hour marathon race to commemorate their brother Tristan

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Centre for Appearance Research NF Survey - Results

Find out how you can take part in CAR's online survey about NF parenting and caring experiences.

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Share your Covid-19 Story - Survey Results

Embracing Complexity share the results of their impact of Covid19 survey, find out more

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Sarah’s Journey

Read Sarah's personal journey with NF

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Hour of Power – Love Yourself Valentine’s Day workout for NF

Thanks to all those that got their hearts pumping this Valentine's Day for our NF community!

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Rare Disease Day 2021 and Rare Reach Festival

Find out how you can get involved in the first ever Rare Reach Festival and make sure the Rare communities voice is heard!

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NF Said

Daisy takes on a 38-mile running challenge for her sister Millie, 1 mile a day for every person diagnosed with NF2 a year

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