Patient Representation

Le CERENEF développe cinq missions : le soin, le conseil génétique, la recherche, l’éducation et l’enseignement. Les pathologies cibles sont : les neurofibromatoses (de type 1 et 2), les schwannomatoses, le syndrome de Legius et les formes mosaïques. Dans le cadre de la charte de la filière de soins FIMARAD, le centre s’est engagé à prendre en charge les patients atteints de pathologies orphelines ne disposant pas de centre de référence spécifique si les compétences sont développées localement. Dans la filière FIMARAD l’échange d’expérience et le partage de connaissances entre centres sont la règle.

The NF Collective is a group of organizations dedicated to improving the lives of NF patients and their families by providing accurate and reliable information about NF resources and caregivers. The first national NF organization was started in 1978. Since that time, a number of organizations, many of them involved with this collective, have been created to address various needs within the NF community. Each group has specific focus areas but all share the common goal of curing NF. Recognizing a critical need for NF families to find reliable NF care, the member organizations of the NF Collective joined forces to begin to provide a single, reliable, updated resource for NF.

The NF Registry helps connect patient experience to scientific progress. When you join, you complete a brief survey about your health and experiences once per year. This information provides researchers with a clearer picture of NF and guides new studies and potential treatments. The NF Registry is an online registry for people with all types of NF.

Texas NF was founded in 1980 by an NF mom, Doris Kraft of Austin, and an NF doctor, Dr. Vincent Riccardi (pictured here) of Houston. The Texas NF Foundation is dedicated to providing support to those families impacted by NF and works hard to fund effective treatments for NF by promoting and funding research, and raising public awareness about NF.

NF Midwest brings together individuals and families affected by neurofibromatosis (NF) and schwannomatosis to provide support, resources, and a sense of community. We are dedicated to serving our community across Illinois, Indiana, Iowa, Kentucky, Missouri, and Wisconsin, ensuring no one has to face NF alone.

Primary funder and founding partner of REiNS, the Children’s Tumor Foundation (CTF) is the drug discovery engine for NF. Our patient-first collaborative approach accelerates drug development and brings life-changing therapies to patients faster, driven by our mission to end NF

Consortium of NF clinics and advocacy organization was founded in 1988 by a group of people who were in some way affected by neurofibromatosis. A leading national organization advocating for federal funding for NF research and building and supporting NF communities. supporting patient-centered research.