NF Collective: Providing Reliable Information for Neurofibromatosis

With a few key words and the push of the enter key you can search pretty much any topic you can think of. Although this instant access to information is amazing it can also lead to confusion especially in the world of neurofibromatosis (NF). Several NF organizations recognized the need to work together to address the various needs of the NF community, so in 2015 they came together to form the NF Collective.

The NF Collective built a nationwide website that provides the NF community with reliable information. To date, the collective has collaborated to complete three projects: locate a physician, how to transition to adult care and a program aimed at promoting education and empathy towards NF in schools.

Find a doctor is a great tool available on the NF Collective website that allows you to refine your search based on the type of NF provider you are seeking. You can even limit your search to find providers who specialize in adult or pediatric care. An easy-to-read map view is available that will provide a quick glance at physicians in your state.

In addition to the find the doctor function, The NF collective provides information about transitioning to adult care. When and how to make this transition can be a very confusing time. The NF Collective has provided a printable guide that is a wonderful resource you can share with your family. Actions are broken down into easy-to-understand steps to create a smooth transition to adult care.

Another great program highlighted on the NF Collective website is a program called Classrooms That Care. Classrooms That Care is a service-learning program geared towards students in elementary through Middle school. The program curriculum can easily be incorporated into the classroom to promote awareness about NF, create empathy and encourage students to be more inclusive with others. Printable curriculums are available on the website to utilize or share with your students’ educators.

For more information on the NF collective or to watch a webinar about Classrooms That Care please click on the buttons below.