NF Collective Impact Statement

The NF Collective is the Collaborative commitment of seven nonprofits to solve a specific problem in the neurofibromatosis community.

On December 4, 2015, various leaders in the Neurofibromatosis (NF) community met in Washington, DC to discuss and establish a collective impact initiative. Our ongoing work to scale up is much more effective as a collective effort than any of us could achieve as individual organizations. We have established and built out a single, nationwide website that NF patients and their families can visit to find a doctor, a specialist, and a medical facility that will meet their needs.

We believe this NF Provider Website will be vital to NF patients and their families as well as medical professionals working in the field. Connecting NF patients with appropriate medical care moves the NF cause forward, bringing effective treatments, prevention, and even a cure within reach.

The Littlest Tumor Foundation

The Littlest Tumor Foundation

The Littlest Tumor Foundation is committed to strengthening NF families, building compassion, advancing NF research, and empowering the next generation of NF leaders. We develop and deliver impactful programming including the NF Family Wellness Retreat, the NF Young Adult Leadership Program, and the NF Collective. Since 2012, we have built a successful bipartisan model that supports federally funded NF research. We promote Neurofibromatosis awareness daily. Through social media, our NF Congressional Briefing, collaborations, events, and using our voices online, at symposiums, and on television and radio, we work towards awareness, prevention, and - someday - a cure.

The Neurofibromatosis Network

The Neurofibromatosis Network

The Neurofibromatosis Network is a national organization based in the Chicago area.  It acts as an umbrella organization for independent state and regional NF groups.  The NF Network, through its NF Network Advocacy Program, ensures that federal funding for NF research continues uninterrupted.  Beyond advocacy, the Network’s highest priority is creating and connecting NF communities around the country by outreach to individuals and families affected by all forms of NF.

Neurofibromatosis Northeast

Neurofibromatosis Northeast

Neurofibromatosis Northeast has been promoting research, awareness and advocacy since 1988. We provide research grants to scientists who are looking for therapies for NF, and as a member of the NF Network Advocacy Program we are a prominent voice in Washington, DC advocating for federally funded NF research. NF Northeast has built a strong community of peer support among patients and families in the states we serve: Massachusetts, Maine, New Hampshire, Vermont, Connecticut, Rhode Island, Pennsylvania, New Jersey and New York.

Neurofibromatosis (NF) Midwest

Neurofibromatosis (NF) Midwest

Neurofibromatosis (NF) Midwest is committed to improving the lives of children, adults, and families impacted by neurofibromatosis or schwannomatosis in Illinois, Indiana, Iowa, Kentucky, Wisconsin, and Missouri. NF Midwest focuses on the five areas of Clinics, Awareness, Research, Education and Support or C.A.R.E.S. The organization is community based and staffed and lead by people affected by these disorders. Priorities include improving care through research; supporting clinics and improving clinic access; providing support with peer to peer outreach, camp, scholarships; and increasing education through our website, symposiums, and published materials.

NF Team Foundation

NF Team Foundation

Along with supporting the greater NF family, The NF Team Foundation is dedicated to raising awareness about and research dollars for treatments and a cure for neurofibromatosis.

Texas Neurofibromatosis Foundation

Texas Neurofibromatosis Foundation

In 1980, the Texas Neurofibromatosis Foundation® (TNFF) a non-profit 501(c)(3), voluntary organization was formed to battle Neurofibromatosis (NF) and to serve the needs of those living with this disorder and their families.

 

Our mission: We are committed to meeting the needs of people impacted by neurofibromatosis by providing comfort, support, education, advocacy and funding for a treatment, prevention or cure.

The Children’s Tumor Foundation

The Children’s Tumor Foundation

The Children’s Tumor Foundation (CTF) is a non-profit organization dedicated to improving the lives of the millions of people living with neurofibromatosis (NF). The Children's Tumor Foundation's mission is to drive research, expand knowledge, and advance care for the NF community.

The Neurofibromatosis Clinic Network (NFCN) was established by CTF in 2007 to standardize and raise the level of NF clinical care nationally and integrate research into clinical care practices. With over 50 clinics, the NFCN is the first nationwide network dedicated to improving clinical care and establishing best practices for treating those living with NF.