Nf2UK

3.7K posts

Nf2UK

Nf2UK

@Nf2UK

Dog-eared advocates still hoping for a cure for NF2 related Schwannomatosis

Katılım Şubat 2013
88 Takip Edilen321 Takipçiler
Nf2UK retweetledi
NF2 BioSolutions
NF2 BioSolutions@NF2BioSolutions·
Don't miss our webinar this Friday in recognition of Rare Disease Day! Registration is still open here: buff.ly/rStG47w English subtitles will be available during the transmission. The webinar will be recorded and published on our YouTube Channel "I Need a Cure".
NF2 BioSolutions tweet media
English
0
1
0
35
Nf2UK retweetledi
NF2 BioSolutions UK & Europe
NF2 BioSolutions UK & Europe@nf2biosolution1·
Calling NF2ers in the UK Are you eligible for this study? Please get in touch with Plymouth or Manchester if so. Just 3 more participants needed.
Brain Tumour Research@braintumourrsch

Research Study Seeks Participants with NF2-Related Schwannomatosis and Skin Tumours. 🔬 A UK research study is inviting adults living with NF2-related schwannomatosis (formerly neurofibromatosis type 2) who have skin tumours to take part in an early-stage investigation led by Professor C. Oliver Hanemann, consultant neurologist at Peninsula Medical School, Plymouth. Currently, there are no approved drug treatments for the tumours caused by NF2-related schwannomatosis. Professor Hanemann’s team has identified two promising drug candidates that could change that. This study will help researchers see whether these drugs show early signs of effectiveness and are suitable for larger clinical trials. 📍 The study will take place in Plymouth and Manchester. 👥 Up to 16 participants will be enrolled. 🧬 Participants will provide skin tumour biopsies and blood samples before and after treatment. While there is no immediate personal benefit, the information gained could be an important step toward future treatments. Eligibility: 18 years or older Living with NF2-related schwannomatosis Have skin tumours To learn more or express interest contact: Plymouth: Dr. Sarah Kingdon- Sarah.Kingdon@nhs.net Manchester: Sadaf Naveed - sadaf.naveed@nca.nhs.uk

English
0
2
1
308
Nf2UK
Nf2UK@Nf2UK·
RIP Marie Drew 1942-2025 an early NF2 warrior, an advocate through her work with NF2ADVOCURE and tireless support for others through various support groups inc. the NF2 Crew .. and a true friend. 💔
English
0
0
0
59
Nf2UK retweetledi
NF2 BioSolutions
NF2 BioSolutions@NF2BioSolutions·
The Geoffrey Jefferson Brain Research Centre in Manchester has secured a £700,000 grant to accelerate NF2 research, funding studies into the mechanisms of brain tumours and inflammation pathways in vestibular schwannomas and related tumours. Article here: buff.ly/TPsAMlj
NF2 BioSolutions tweet media
English
0
4
9
384
Nf2UK
Nf2UK@Nf2UK·
So as the eminent Prof DG Evans finally retires all we can do is wish him well in his much reserved retirement and say thank you - You Made a Difference .. 👏
English
0
1
2
118
Nf2UK retweetledi
Children's Tumor Fdn
Children's Tumor Fdn@ChildrensTumor·
Devastating news: NF research funding through the CDMRP has been eliminated for FY2025. Other disease areas were also affected, but this is a huge loss for our community. Read our full statement: ctf.org/news/ensuring-…
Children's Tumor Fdn tweet media
English
1
14
15
1.9K
Nf2UK
Nf2UK@Nf2UK·
Update on Cancer and Central Nervous System Tumor Surveillance in Pediatric NF2-, SMARCB1-, and LZTR1-Related Schwannomatosis pubmed.ncbi.nlm.nih.gov/39937237/
English
0
0
2
74
Nf2UK
Nf2UK@Nf2UK·
Classification of schwannomas and the new naming convention for "neurofibromatosis-2": Genetic updates and international consensus recommendation pubmed.ncbi.nlm.nih.gov/39786185/
English
0
0
3
58

Keşfet

@elonmusk @BarackObama @taylorswift13 @cristiano @BillGates @NASA @nikifrancismediavine @katyperry