This study is seeking to learn how different eye tests and devices can help understand vision in patients with NF1, including how vision loss might show up on different eye imaging devices that measure the nerves or the blood vessels of the eye. The study aims to understand the mechanisms of vision loss caused by neurofibromatosis type 1 (NF1)-associated optic pathway gliomas, or NF1-OPGs. Subjects eight years and older with NF1 are eligible to enroll.
If you or someone you love is living with NF, you know the costs can add up: therapies, assistive devices, specialists, and more. An ABLE account is a savings tool built to help with exactly that. The Basics ABLE stands for Achieving a Better Life Experience. It’s a tax-advantaged savings account for people with disabilities.... Read More
For young children with neurofibromatosis, medical appointments can feel big, unfamiliar, and sometimes scary. An eye exam, an MRI, a doctor’s visit, or even the mention of a needle can bring up questions that are hard for a small child to understand — especially between the ages of 3 and 7, when imagination is strong... Read More
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