Lost in translation #PatientPerspective #NF2 #NeurofibromatosisType2

The The National Lottery Community Fund has enabled us to provide extra support to the #NF2 community in the UK. We’ve provided virtual social events, communication resource packs, and launched #NF2andYou as an information sharing resource 🥳

This coming year will see our team build on the work of our patient advocacy as we begin to campaign on vital issues affecting NF2ers in the UK. Recently our Director & Engagement Officer caught up to chat about why its needed #NF2 #PatientEmpowerment youtu.be/RmLmSooIwFg

As Wales takes great steps in policy planning for Rare Disease care, it’s great to see Nerve Tumours UK offering the first specialist NF nurse’s service in Wales. Affected by NF and living in the region? find out more nervetumours.org.uk/news/first-spe…

Our latest #NF2andYou podcast explores #Pilates which has been found to be significantly beneficial for neurological conditions, spine health, and balance. A must for anyone with #NF2. Check it out #NF2 youtu.be/YMaAIeeJ40k

Bangor Uni Researcher is conducting #research to explore ‘Identity & NF2’ and is currently recruiting for participants. If you have a diagnosis of #NF2 for longer than 12 months and are interested in taking part, you can find more info here canyouhearus.co.uk/research/nf2-r…

This is so true #OccupationalTherapy #Wellbeing #Independence

Absolutely delighted to have been joined by Consultant Clinical Psychologist Dr Rebecca Williams to breakdown #Anxiety for our #NF2AndYou #Podcast check it out youtu.be/mNJyPgqQGFM

The sun is out and it’s time for the weekend. Hope you have a great one folks 🤟🏻 #WeekendVibes #FridayFeeling

This week we’re catching up with the amazing Juliette Buttimore to chat about how #NF2 patients can get the most out of their clinic experience and ongoing relationship. Episode drops on our YouTube channel this Thursday #NeurofibromatosisType2 youtube.com/channel/UCrLGt…

This week is #DeafAwarenessWeek2021 and the theme for this year couldn’t be more apt ‘Coming Through it Together’. What are you doing to celebrate? #NF2

We’ve got boxes of our #BSL alphabet bookmarks going out to businesses this week. It’s not too late to order your free pack - send us a message and we’ll post some out 📦 #DeafAwarenessWeek2021 #DAW2021

Great article on The Limping Chicken | Deaf Culture, News and Arts ‘10 ways to deal with deafness (that I wish I’d known)’ from Teresa Garretty #DeafAwarenessWeek2021 limpingchicken.com/2015/09/18/ter…

Excellent tips from SignHealth on how to communicate with deaf #patients #DeafAwarenessWeek2021 #NF2 signhealth.org.uk/resources/lear…

To celebrate #DAW2021 we’re sharing our #NF2andYou podcast episode ‘Everything you Need to Know About Lipspeakers’ with @LipspeakerUKThis has been our most popular episode so far! Check it out youtu.be/W0SLtF19Pz8

There is always a way #BridgingCommunication #DAW2021

Shine A Light on NF2 this #WorldNF2Day with our amazing range of shop products. Help raise awareness in your community & support the wider NF community this #WorldNFAwarenessMonth – show your support and look great at the same time! bit.ly/3v5OyWA #EndNF

Do you want to contribute to NF2 research? Bangor University researcher, Suzi McGowan, is recruiting for participants to study how NF2 affects identity. If you want to find out more and get involved, visit our website for further details canyouhearus.co.uk/research/nf2-r… #NF2 #UK

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A mega milestone and a new epic opportunity for NF2ers!! Today marks the 10-year anniversary of the book launch for ‘NF2: Our Journeys’ Can You Hear Us? (CYHU) are looking to produce another book please email us on [email protected] if interested in having your story in it