- Adult NF1
- General Care
Managing your health with Neurofibromatosis Type 1 (NF1) can feel complex, but you don’t have to navigate it alone. We’re here to provide you and your medical team with the resources you need. Below, you’ll find the official care guidelines for adults with NF1, developed by leading experts in the field to help ensure the best possible care.
A Tool for You and Your Doctor
These guidelines are a vital resource for ensuring you receive comprehensive care. Because NF1 can affect many parts of the body, even the most dedicated primary care physicians may not be familiar with all the recommended screenings and treatments. Sharing this document can help your doctor understand the specific needs of an adult with NF1 and partner with you on a proactive care plan.
Although many issues in adults with NF1 can be managed by an internist or family physician, we strongly encourage evaluation by, and care coordination with, a specialized NF1 clinic.
Genetics in Medicine, 2018
How to Use These Guidelines
We encourage you to download these guidelines and bring them to your next doctor’s appointment. It’s a great way to open a conversation with your primary care provider and other specialists about your long-term health. For specialized care, you can also search for an NF clinic near you.