The resources below provide information about treatment options for this condition. If you have questions about which treatment is right for you, talk to your healthcare professional.
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD. Suggest an organization to add.
Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
2016 Million Dollar Bike Ride Pilot Grant Program
August 15, 2016
Developing Endpoints to Facilitate Clinical Trials in Rare Diseases
Tuesday, November 17, 2015 -
Friday, November 20, 2015
Location: Bethesda, MD
Description: The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration holds a winter annual conference each year to develop and to discuss novel outcome measures for clinical trials of neurofibromatosis and schwannomatosis, a group of related tumor suppressor syndromes. The annual winter conference has been very successful in stimulating international collaboration among the many different specialists involved in the treatment of these rare conditions. The 2015 conference theme is to develop consensus-driven outcome measures for clinical trials in patients with rare disease such as neurofibromatosis and schwannomatosis.
Contact: Dr. Rashmi Gopal-Srivistava(301) 402-4336
Children's Tumor Foundation 2014 Neurofibromatosis (NF) Conference
Saturday, June 7, 2014 -
Tuesday, June 10, 2014
Location: Washington , D.C.
Description: In order to stimulate exchange between basic scientists and clinical investigators, a number of sessions will be organized to discuss preclinical models and findings side by side with clinical findings and current management in patients. The hope is that this exchange will promote the translation of preclinical findings into clinical trials. Moreover, invited speakers outside of the NF community will add to the scientific diversity and stimulate discussions and promote new collaborations.
Contact: Jill A. Morris, Ph.D.,(301) email@example.com
Co-funding Institute(s): National Institute of Neurological Disorders and Stroke, Office of Rare Diseases Research
The following diseases are related to Neurofibromatosis. If you have a question about any of these diseases, you can contact GARD.
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