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.

Areas of Focus: Patient and Family Support, Research

Programs & Services: Endurance and Community Events, Classrooms That Care Support

Region: National

Contact Info
(612) 232-2038
thenfteam.org

Areas of Focus: Improving Care, Raising Awareness, Supporting & Research, Providing Education and Support

Programs & Services: One on One Support, Educational Programs, Clinic Grants, Scholarships, Camp Support, Young Leadership Program, Advocacy, Community Programs

Region: Illinois, Indiana, iowa, Kentucky, Missouri, Wisconsin

Contact Info
NF Midwest
473 Dunham Rd, Suite 3
St. Charles, IL 60174
(630) 945-3562
nfmidwest.org

Areas of Focus: Helping NF families, Advocacy

Programs & Services: Family Aid Grants, Katelyn and Kylie Earle Scholarship, PJ’s for the Holidays, Birthday Celebrations, and coming soon… NF Family Pathways

Region: National

Contact Info
306 North Loop 288, Suite 900
Denton, TX 76209
www.seventeen22.org

Areas of Focus: Advocacy, Young Adults

Programs & Services: Young Leadership Program, Wellness Retreat

Region: National

Contact Info
Littlest Tumor Foundation 
P.O. Box 7051 Appleton,
WI 54912 
(920)475-6599
littlestumor.org

Areas of Focus: Children’s Tumor Foundation is the drug discovery engine for NF. We drive research, expand knowledge, and advance care for the NF community

Programs & Services: Research Funding, Patient Resources & Support, NF Clinic Network, NF Registry, Advocacy & Leadership, Community Events

Region: Global

Contact Info
697 Third Avenue, Suite 418
New York, NY 10017
(212) 344-6633
www.ctf.org

Areas of Focus: Patient Quality of Life- we work with families throughout their Journey of Hope

Programs & Services: Education for patients and healthcare professionals, Peer to Peer program, stipends, scholarships, research, advocacy.

Region: ME, MA, VT, NH, RI, NY, NJ, CT, PA

Contact Info
9 Bedford Street
Burlington, Massachusetts 01803
(781) 272.9936
www.nfnortheast.org

Areas of Focus: Providing comfort, support, education, advocacy, and funding of research.

Programs & Services: Camp, Scholarships, Hug Club, Educational Programs, Young Leadership Program, Advocacy, Community Programs

Region: Texas

Contact Info
511 East John Carpenter Freeway, Suite 500
Irving, TX 75062
(972) 739-6086
texasnf.org