RARE Rev-inar episode 024: Neurofibromatosis type 1 (NF1): navigating diagnosis, care, and transition Fecha y hora 19 mar 2026 11:00 a. m.

https://us02web.zoom.us/webinar/register/WN_nY8AFTRxQtePkbt4QNkBHw#/registration Don't miss our conversation on Neurofibromatosis type 1 (NF1)! Hear from paediatric CNS Katrina Kettle on the function of the new NF1 passport and essential early independence-building strategies to ensure a smooth transition to adult services. Book your free place! https://editions.rarerevolutionmagazine.com/html5/reader/production/default.aspx?pubname=&edid=b226070d-f1dd-4177-bfbc-65a7f9ba2588&pnum=40 Advocate, mother and physician Dr Mariëlle van den Berg shares her personal and professional journey at the forefront of Rett Syndrome progress. Highlighting results from a recent white paper and international Burden of Illness survey, she reveals the hidden mental, financial and practical struggles families face. With bold recommendations for policy reform in lifelong care, Mariëlle calls for Europe-wide standards and empowers families to use these findings to secure better support at every stage.