New Guidelines for the Care of Adults with NF1

Great news! A new, detailed clinical practice guideline has been made available on the care of adults with neurofibromatosis type 1. This was written to help physicians treat their patients with NF1 and is a great resource to share with your doctor. It’s a wonderful piece published by the The American College of Medical Genetics and Genomics (ACMG) and written collaboratively by several NF experts.

We’d like to thank ACMG and the NF experts (Douglas R. Stewart, MD, Bruce R. Korf, MD, Ph.D, Katherine L. Nathanson, MD,
David A. Stevenson, MD and Kaleb Yohay, MD) for undertaking this momentous task!

The article is available here.

Recent Posts

  • A Conversation about NF1 and Everyday Skills

    Everyday Skills in NF1: What Parents Can Watch for and How to Help A practical resource for parents and caregivers from NF Midwest Parent Conversations Parents and caregivers affected by NF carry a lot of questions, and that’s normal.  Some are medical. Some are emotional. And many are practical:  That is why NF Midwest created NF Parent Conversations, a welcoming online... Read More
  • Meet the 2026 NF Midwest Scholarship Recipients 

    The NF Midwest Scholarship Program is proud to celebrate another year of supporting students with neurofibromatosis as they work toward their educational dreams.  Each year, NF Midwest awards scholarships to students across our six-state region. These students are pursuing their goals while also navigating life with NF, and we are honored to play a small... Read More

Responses

Respond

Your email address will not be published. Required fields are marked *