New Diagnostic Criteria Announced for Neurofibromatosis Type 2 (NF2) + Schwannomatosis (now known as NF2-SWN)
You may have seen recently on various platforms about the revised diagnostics criteria for NF2 and Schwannomatosis.
CTF have digested all the info here and its easier to direct you to read here than rewriting it all!
If you have any questions, then please contact us and we will try our best to answer.
NF2 BioSolutions Launch Merlin Therapeutics
By launching Merlin Therapeutics, Vibe Bio and NF2 BioSolutions are creating a different, community-driven approach to help rare disease patients access the capital and resources needed to develop therapeutics. This unique approach makes treatments economically and scientifically viable, and gives patient communities unprecedented ownership over the results. Take a look: https://www.vibebio.com
The biggest obstacle to treating patients with rare and overlooked diseases is not finding therapeutics that can help – it’s funding them. Vibe Bio is working with @NF2 BioSolutions to build a community of patients, scientists, and partners to identify and develop promising treatments for NF2 and other rare diseases.
NF Young Adults International Summit
Took place LIVE from New York on 27th and 28th August 2022. Organised by Littlest Tumour foundation, Childhood Tumour Trust, NF2 BioSolutions UK & NF Patients United. It was a fantastic 2 days filled with informative talks about everything NF! A meeting of researchers, consultants and NF advocates.
NF2 BioSolutions UK CEO Clare spoke about our research, Olivia our Youth Ambassador gave an emotional speech about her NF2 journey, and our trustee Prof. Gareth Evans spoke about Mosaicism within NF2.
NF European Conference patient day
Took place in Manchester on 9th October and was well attended both in person and virtually.
A great day enjoyed by all, with lots of inspirational and informative talks and organisations.
Amazing NF2 research project presentations by Adam Paul, Grace Gregory (both sponsored by NF2 BioSolutions UK & Europe) and Daniel, many congratulations to Adam on winning the NFPU Community award, which was well deserved.
The day had great presentations by Dr. Anke Hensiek on Peripheral Neuropathy and Prof. Simon Lloyd on Ci/ABI and hearing rehabilitation. There was amazing talks on Wellbeing & benefits by Stephanie Yin (Rareminds CIC) and Mary Thomas (Guys and St Thomas’s Hospital)
You can find links to the NF2 talks of the day here:
Hearing Loss and Rehabilitation in Neurofibromatosis Type 2 – YouTube
Neuropathy in NF2 by Anke Hensiek – YouTube
Dealing with diagnosis & mental health – YouTube
NF2 Showcase Webinar
On February 4th 2022, NF2BioSolutions UK together with One Nucleus presented our first NF2 Showcase webinar, with Prof. Gareth Evans, our 2 PhD NF2 researchers, Grace and Adam and major fundraiser Andy White. If you missed this you can watch it on the link here: https://www.youtube.com/watch?v=o2Eavjy5i_0
On Rare Disease Day we introduced our TILs approach. The webinar here presented by Dr Claire O ‘Leary, University of Manchester & Geoffrey Jefferson Brain Research Centre, with Gill Atlan (Vice President NF2 BioSolutions), Clare Goddard (CEO, NF2 BioSolutions UK), Omar Pathmanaban (Research Lead, University of Manchester & Geoffrey Jefferson Brain Research Centre) and Cathal Hannan (Neurosurgery Research Registrar). You can read more about this research in our Research Section.
In case you missed the webinar you can watch it on the link here: https://www.youtube.com/watch?v=R0yd2WCybS4
Finding Your Inner Strength by Olivia Goddard
Rarity Life Issue 3 by Rarity Life – Issuu
For media enquiries, please email firstname.lastname@example.org
One Nucleus is partnering with us for the Findacure mentor program, find out about them here
Brain Tumour Research
Proud members of the mentoring program 2021/22
Our Charity Partners
Cladceil Ltd have chosen us as charity partners. This is a charity close to their hearts, as the wife and youngest son of the MD Pete Ward, both suffer from this rare genetic disorder, that affects 1 in 35,000 people.
EAST MIDLANDS LEADING CLADDING AND ROOFING CONTRACTOR
COMMERCIAL AND INDUSTRIAL
You can find out more information about them from these links
If you are interested in becoming a charity partner or would like to make us your charity of the year then please get in touch with Jo at email@example.com or our CEO Clare Goddard at firstname.lastname@example.org
Can You Hear Us (a social group specializing in gatherings and meetings for those affected by NF2 and their YouTube page has a variety of podcasts regarding lived NF2 experiences): https://www.facebook.com/canyouhearus
NF2 UK Network (this group is for Patients, family, friends and carers, for UK only): https://www.facebook.com/groups/2069294610016554
NF2 UK Patient network (this group is for NF2 Patients ONLY for UK only): https://www.facebook.com/groups/1852464025050935
Facial Palsy: https://www.facebook.com/facialpalsyuk
Nerve Tumours UK Community group: https://www.facebook.com/groups/NerveTumoursUKcommunity/?ref=pages_profile_groups_tab&source_id=193019234077384
Nerve Tumours UK Teens group: https://www.facebook.com/groups/NerveTumoursUKteens/?ref=pages_profile_groups_tab&source_id=193019234077384
Mental Health: https://www.nhs.uk/every-mind-matters/
Sudden hearing Loss support: https://suddenhearingloss.support/
International Facebook group (this is an international NF2 group ifor Patients, family, friends and carers): https://www.facebook.com/groups/295400233813076
International Facebook just for NF2 people: https://www.facebook.com/groups/402786863127334
NF2 parent support group: https://www.facebook.com/groups/769572016443579