Description
“How NF2-SWN Effects Me” by NF2 BioSolutions UK & Europe
NF2-SWN is a rare disease effecting less than 1000 people in the UK; all genders, ages and ethnicities.
People with NF2-SWN are affected by Brain Tumours, Spinal Tumours, Optical Tumours, Deafness, Blindness, Epilepsy, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy … & much more!
To celebrate Rare Disease Day 2025 we are bringing our popular social media campaign to life ‘How NF2-SWN Effects Me’ – in a first of its kind exhibition to raise awareness and support research for our rare condition. Real people affected by NF2-SWN share their journeys, shedding light on the challenges they face, and inspiring hope for better understanding and treatments.
These personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2-SWN patients and their families.
NF2-SWN, is a lifelong genetic condition, there is no cure, no magic wand to erase its presence. Instead, there is resilience, determination, and a shared journey among those who navigate its complexities.
If you are in the area then please pop along to see the exhibition. Our COO Joanne Ward (a patient) will be delighted to welcome you and share news of our research into better treatments for those living with NF2-SWN
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