Network Resources
Overview
Finding resources to assist you on your NF journey can a challenging task. That is why the NF Network works with experts, doctors, and hospitals to create new content and highlight existing resources. Continue reading to discover webinars, the network edge and more.
In our pursuit of finding better treatments and a cure for neurofibromatosis, the NF Network is here to be a lifeline for those affected by or living with all forms of NF. Our support program, the “NF Heartline,” is a hotline designed to provide help and answer questions on your NF journey.
The NF Heartline directly connects you with a knowledgeable NF advocate who can provide you with personalized support along your NF journey. By contacting the NF Heartline, you will be connected with someone who understands the challenges and concerns that you may be facing and will be able to provide help in areas you may need it most. We will be able to match NF friends and families with others living with neurofibromatosis, provide information on NF experts and specialists in locations across the country, share research and clinical trial opportunities available to the NF community, and much more.
The NF Network offers an abundance of resources including educational materials, recorded webinars, connections to expert NF care and local support, information on clinical trials, and many upcoming events. We are here to make sure no one travels the NF journey alone, and the NF Heartline is here to help find the answers you need.
We encourage you to reach out and get connected with our team. We are here to help. Call the NF Heartline at 800-942-6825 or email us at admin@nfnetwork.org.
Network news is gathered from various sources to provide you with up to date and accurate information of things happening in the NF community.
I’ve Had 18 Surgeries, But I’m Still Standing Strong: ‘Faith Is My Anchor’
Soundtrack of Silence: Matt Hay | TEDxWrigleyville
REiNS Study: Patient preferences for gene therapy in neurofibromatosis and schwannomatosis
‘A Different Man’ Star Adam Pearson Says His Facial Disfigurement ‘Opened Doors’
Webinars
The NF Network is pleased to present our free webinar series on topics presented by top medical professionals and NF advocates from across the country. From discussions on alternative forms of stress relief, to updates on clinical trials, and insights from parents living with children with neurofibromatosis, we are happy to share these brief webinars to better educate and support you. Interested in a topic that you don’t see captured below? Please reach out to admin@nfnetwork.org and let us know what you’d like to see covered next!
Neurofibromatosis Parent Panel – Day of iNFormation
October 12, 2020
Clinical Challenges and Advancements in PNs & MPNSTs
October 12, 2020
The NF Network does not endorse the content or opinions expressed by speakers at our events or in our webinars; rather we provide a platform for the exchange of ideas. The views expressed by speakers are their own and do not necessarily reflect the official position of the organization. Consult an NF specialist for personalized medical advice.
The Network Edge
The Neurofibromatosis Network and Neurofibromatosis Northeast are delighted to bring you our science column, The Network Edge, providing a summary of recent highlights from NF research and clinical trials.
The research captured in these updates is a direct effect of the hard work of the NF Network, their advocates, and their work on Capitol Hill fighting for continued federal funding of NF research. These efforts play a central role in progress toward a cure.
As new volumes are released, The Network Edge will bring you the latest research news to keep you abreast of advancements in treatment and clinical care for all forms of NF.
The Network Edge is presented in bite-sized pieces, allowing you to easily find and focus on those topics of most interest to you, whether it is NF1 learning disabilities studies, NF2 clinical trial updates or NF2-related schwannomatosis news.