RARE REV-inar episode 024: Part 1: Neurofibromatosis type 1: diagnosis and early intervention

This is an excerpt of a longer webinar which originally aired on 19th March 2026 called RARE REV-inar episode 024 - Neurofibromatosis type 1 (NF1): navigating diagnosis, care, and transition. This REV-inar is sponsored by Childhood Tumour Trust who, this year, are celebrating 10 years of supporting patients and families living with Neurofibromatosis Type1. This is one of a series of collaborative activities that will run throughout 2026 to celebrate this important milestone and has been supported through funding from Alexion AstraZeneca and Springworks Therapeutics. Content and themes have been developed independently by Childhood Tumour Trust and us here at RARE Revolution. Speakers: Bev Henderson who is a rare parent to a child with NF1, who also brings healthcare experience as a health visitor in the NHS. Lily Sandell who is a CTT Youth Ambassador who lives with NF1 and is involved in a range of their programmes and initiatives. Vie Portland is founder of VIP Empowerment, where she helps people Find Their Fabulous! Who is also an author and hosts weekly storytime sessions for Childhood Tumour Trust. Dr Will Evans, a GP in the NHS, whose varied research interests focus on rare and hard to diagnose conditions. He has also been key in the development of the recently launched care guidelines for NF1