From the Network

Health and Safety First: NF Network and COVID-19 Policy

Health and Safety First: NF Network and COVID-19 Policy

In The News

Local teachers speak out in Washington for a cure for a rare disease

Stephanie Ham and fellow first-grade teacher Lauren Hanrahan recently went to Washington, D.C. to fight for funding for a rare disease, Neurofybromatosis Type 2, which Hanrahan has.


Encouraging News for Kids with Neurofibromatosis Type 1

30 years ago, Dr. Collins led a team that discovered the gene that underlies NF1. Today, he is pleased to share what promises to be the first effective treatment to help young people affected by NF1.

Event Highlight

A Message from NF Hope Concert Co-Founder, Jeff Leibow

In light of the spread of COVID-19, the NF Network and the NF Hope Concerts bring the difficult and proactive choice to cancel the upcoming concerts in both Chicago and New York City.

People Spotlight

From Graduate to Advocate

Rachel Sakofs, a Speech Language Pathologist and alum of MGH Institute of Health Professions, uses her IHP education to help her son and raise awareness of his rare disorder.

Want to view archived newsletters? Click Here!


Sign up to receive the latest neurofibromatosis news and information in your inbox!



Have a story you'd like to share with the NF community? Click Here!