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.
2023 international youth summit – an update
‘On the 30th of July 2023 NF2 BioSolutions UK teamed up with the Littlest Tumor Foundation and the Childhood Tumour Trust to host The NF Young Adult International Summit 2023.
The event was held online this year and was a great success! The purpose of this event is to empower, inspire, and motivate young adults with NF. There was a panel of inspirational speakers telling their amazing stories of advocating for themselves and overcoming the difficulties of life with NF.
We had a segment on mental health tips and self care, along with a fantastic motivational speaker to wrap the conference up. The feedback from all who attended was really positive and most importantly Empowered, Inspired, and Motivated young adults from all around the world!
Look out for info coming soon for the NF Young Adult International Summit 2024!
As always, NF is not your weakness, it’s your strength.
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
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