Selected Resources
Newly Diagnosed? Get Connected: If you would like to speak with another parent of a child diagnosed with NF1, let us know and we will put you in touch with someone nearby who understands.
Learn About NF Clinics and Doctors in California: This is an NF California program recorded May 22, 2021. Specialists who work with NF patients give a brief introduction to the services provided at their hospital, clinic or practice, followed by contact information for their location.
Parents’ guide to 504 plans and IEPs: What they are and how they’re different. EdSource article, March 29, 2022.
Returning to School: The Hospital Education Advocacy Liasons (HEAL) program of Stanford's Lucile Packard Children's Hospital has assembled useful information about Special Education, IEPs, 504 Plans, and Home/Hospital Instruction. There are some sample letters that can be copied and given to your school on behalf of your child. There is also a list of modifications that may be helpful for the school to try.
Health Supervision for Children with NF1 (2019): The American Academy of Pediatricians' guidance for the clinician in rendering pediatric care.
NF Registry: Join the NF Registry. The registry is a worldwide database of individuals with NF. The registry includes privacy protections. The database helps researchers understand the nature of the disorder. It also helps match patients with clinical trials, and helps patients find opportunities to get involved with research.
NF Studies and Clinical Trials in California: Learn about current studies and clinical trials addressing Neurofibromatosis problems. Presenters from Northern and Southern California spotlight trials available at their facilities in this video recording of a webinar hosted by NF California on May 24, 2022.
Clinical Trials Worldwide: Find clinical trials at ClinicalTrials.gov, a database of privately and publicly funded clinical studies conducted around the world. This resource is provided by the U.S. National Library of Medicine.
: Children's Tumor Foundation: The Children's Tumor Foundation's mission is to drive research, expand knowledge, and advance care for the NF community.
: NF California: NF California's goal is to create a community of support for individuals and families affected by Neurofibromatosis through education, patient advocacy, coalitions, raising public awareness, and supporting research and treatments for a cure.