NF2: Can You Hear Us? Neurofibromatosis Type 2 |

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NF2: Life Beyond Limitations

SOMETIMES ALL WE NEED IS SOMEONE TO LISTEN, TO SHARE EXPERIENCES WITH, AND TO SHOW US THERE IS HOPE.

We know that getting a diagnosis of NF2-related schwannomatosis (formerly known as Neurofibromatosis Type 2) can be an overwhelming experience. We also know that information about what to expect with the condition can be be hard to find. As a result, many people are left feeling alone.

Every person living with NF2 is affected in different ways and even though it can be isolating, being part of a community means you can share experiences, coping strategies or simply ask for advice when you need it.

There are many reasons we do what we do but above all, we aim to show that life doesn’t have to be dictated by NF2.

NF2 & You Podcast

Our video podcast, NF2 & You is brought to you by CYHU for the NF2 Community and focuses on issues that affect the daily lives of NF2ers. We’ll be discussing all things work, play, patient rights, health awareness, and everything in between.

Visit our Podcast

Campaigns

The UK NF2 Specialist Clinics are dedicated to listening to the views of patients. We strongly believe in representing lived experience to clinical teams and our campaign and research work ensures that your voice is heard.

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Online Community

We run two facebook groups providing a network of people affected by NF2 which means you can ask questions, share experiences and get advice on practical support.

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Book Resources

In 2013, Can You Hear Us? launched its first book, NF2: Our Journeys, an invaluable resource designed to provide real world experience of NF2 with helpful information and inspirational stories. This was followed by a second book in 2017, Living with NF2: From Us to You, which explores the emotional issues that are commonly experienced throughout a journey with NF2.

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AN ANTIDOTE TO ISOLATION

Since launching, CYHU has worked with those directly and indirectly affected by NF2 and has sought to share insight with organisations involved in clinical and social support for people living with the condition (informally known as NF2ers).

As a result, we have produced two books both for NF2ers and also for friends, family, educators, GPs and anyone else involved in their lives.

A free digital copy of our first book ‘NF2: Our Journeys’ is available to download on our BOOKS page. For a free copy of ‘Living With NF2: From Us to You’, simply click the button below to email us and we’ll get a copy posted out.

Additionally, we have distributed free paperback copies of both books to clinics across England. Chat to your specialist nurse to get your hands on one.

Request Your Free Copy of 'Living With NF2: From Us to You'

We are passionate about understanding lived experience which is why we work with the community to research life with NF2. In addition, we work with clinical teams to communicate issues that are important to you.

Click here to check out our research and campaign work

NF2: Life Beyond Limitations

NF2 & You Podcast

Campaigns

Online Community

Book Resources

We are passionate about understanding lived experience which is why we work with the community to research life with NF2. In addition, we work with clinical teams to communicate issues that are important to you.

JOIN OUR ONLINE COMMUNITY