Connect with the NF Network's NF Heartline

Author: NF Network
Published On: 10/21/2021

With a sincere thank you to our partners at AstraZeneca, the NF Network launched a new program, the NF Heartline – a hotline designed to provide help, answer questions, and find hope on your NF journey. 

By contacting the NF Heartline, your call or email is answered by someone who understands the challenges and concerns that you may be facing on your NF journey. Through multiple programs and resources, the NF Network will do our best to provide help in areas needed most.

Since its inception, the NF Heartline has provided personalized support to many members of the NF community. Whether it’s their own journey, their child’s, a friend’s or a loved one’s, the NF Network has been able to match NF friends and families with others living with neurofibromatosis, provide information on NF experts and specialists in locations closest to them, share research and clinical trial opportunities available to the NF community, and much more.

Members of the NF community have contacted the NF Heartline for many reasons. In Kassandra’s case, she was lacking connection and support in her own life and wanted to connect with others who would understand her challenges and struggles. After reaching out to the NF Heartline, Kassandra was able to connect with another young person, Brianna, who also has NF1. Their connection was able to fill a void in Kassandra’s NF journey.

After living 32 years not understanding why she was dealing with the various undiagnosed health issues that her mother, grandmother, and others in her family endured, Megan believed she had NF1. Due to her background in medical coding, Megan started researching some of her issues and based on her symptoms believed she had NF1. In her research, Megan happened to find the NF Heartline and called to find an NF specialist who could finally provide her confirmation of her health issues. The NF Network was able to provide Megan contact information for NF specialists in her area, tools to give her a sense of direction, answers she desperately needed, and most importantly, hope.

Carolyn reached out to the NF Heartline with interest in learning about NF2 and various outcomes and trajectories of the disease. Through learning more about NF2, Carolyn sought to help kids through their journey in the best way possible. The NF Network connected Carolyn to our NF2 ambassador to shed some light on NF2 and provide guidance in helping and understanding what she can do for her loved one and others with NF2.

The stories and experiences shared are just the tip of the iceberg in how the NF Heartline provides support to the NF community, to ensure you don't have to face this NF journey alone. It is our goal to be here for you. Please contact the NF Heartline at 800-942-6825, or email

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