On September 10, 2025, the Food and Drug Administration approved selumetinib (KOSELUGO, AstraZeneca Pharmaceuticals LP) granules and capsules for pediatric patients 1 year of age and older with neurofibromatosis type 1 (NF1) who have symptomatic, inoperable plexiform neurofibromas (PN). FDA previously approvedselumetinib capsules for pediatric patients 2 years of age and older with NF1 who have symptomatic, inoperable PN.

Are you and your HCP often in agreement with your treatment plan for neurofibromatosis type 1 (NF1) or neurofibromatosis type 1 with plexiform neurofibromas (NF1-PN) or are there times when you feel misunderstood? Clear communication is key to a successful patient/caregiver and HCP relationship.

This year, the NF Hope Concerts are marking a significant milestone: fifteen years of concerts. We recently held an amazing, record-breaking concert in Las Vegas, and our upcoming 6th annual concert in Chicago promises to be just as exceptional. We have an exciting lineup of talent this year, and our mission is more important than ever!

The support we received from the NF Network was truly life-changing during a time when we needed help the most. Our only family vehicle had completely broken down, bills were piling up, and after years of managing Austin’s complex medical journey, our finances were utterly depleted. We had been doing everything possible to keep up with his care, but it felt increasingly impossible to stretch any further.