Neurofibromatosis type 1 Roots, resilience and the reality of NF1 25 April 2026 ++++

https://rarerevolutionmagazine.com/digitalspotlight/roots-resilience-and-the-reality-of-nf1/ We are delighted to launch our newest Digital spotlight all about neurofibromatosis type 1(NF1). Huge thank you to our sponsors Childhood Tumour Trust who celebrate their 10th anniversary as a charity in 2026. Dive in to hear from Vanessa Martin, the CTT Youth Ambassadors as well as specialists Katrina Kettle and Mary Thomas. For ten years, Childhood Tumour Trust (CTT) have been a lifeline. Founded by Vanessa Martin, after her daughter Nicole discovered the transformative power of “camp”, CTT tackles the hidden realities of neurofibromatosis type 1 (NF1). Through camps, their youth ambassador programme, regional support and relentless advocacy, CTT offers families a soft landing, a powerful community and a voice that won’t be ignored Written by Nicola Miller, RARE Revolution Interview with Vanessa Martin, founder and CEO, Childhood Tumour Trust Neurofibromatosis type 1 The journey of care in NF1: referral, review, and ‘gold’ standards of care 25 April 2026 https://rarerevolutionmagazine.com/digitalspotlight/the-journey-of-care-in-nf1-referral-review-and-gold-standards-of-care/ Neurofibromatosis type 1 (NF1) sits in a curious space: common enough to be regularly encountered but complex enough that many clinicians feel out of their depth. Mary Thomas, lead advanced nurse practitioner (adults), and Katrina Kettle, paediatric deputy clinical nurse specialist, are working to shape what “gold standard” NF1 care should look like—across a lifetime. From first referral to complex tumour management, their vision centres on three pillars: timely recognition, structured surveillance and empowered individuals. The “window of opportunity”: why early diagnosis in NF1 matters 25 April 2026 https://rarerevolutionmagazine.com/digitalspotlight/the-window-of-opportunity-why-early-diagnosis-in-nf1-matters/ Early diagnosis in neurofibromatosis type 1 (NF1) can’t predict every outcome, but it can provide a roadmap. From childhood surveillance for optic pathway gliomas and scoliosis, to timely SEN support and informed family-planning decisions, a formal “label” opens doors to protections that guesswork never can. Specialist nurses Katrina Kettle and Mary Thomas share how early recognition, clear guidance and peer connection turn fear of NF1 into informed, proactive care for the whole family. Neurofibromatosis type 1 NF1 healthcare transition – overview and infographic 25 April 2026 https://rarerevolutionmagazine.com/digitalspotlight/nf1-healthcare-transition-overview-and-infographic/