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• VHL Family Alliance A site dedicated to improving diagnosis, treatment and quality of life for individual and families afflicted by VHL.
• Brain Tumor Society The Brain Tumor Society provides resources for patients, survivors, family, friends and professionals.
• Parkinson's Disease Foundation Dedicated to supporting and promoting the highest-quality research world-wide into the cause(s) and cure of Parkinson's disease, and for better symptomatic treatments. 
• Project ALS Project A.L.S. raises funds for ALS (amyotrophic lateral sclerosis) research.
• The Genetic Alliance
• Huntington's Disease Society of America Dedicated to finding a cure for Huntington's Disease (HD) while providing support and services for those living with HD and their families.
• Sturge-Weber Foundation The Sturge-Weber Foundation’s mission is to improve the quality of life for individuals with Port Wine Stains (PWS), Sturge-Weber Syndrome (SWS) and Klippel-Trenaunay Syndrome (KT).
• American Epilepsy Society Seeks to promote interdisciplinary communications, scientific investigation, and exchange of clinical information about epilepsy.
• Hydrocephalus Foundation The Hydrocephalus Foundation, Inc. (HyFI) is a nonprofit organization dedicated to providing support, educational resources and networking opportunities to patients and families affected by hydrocephalus.
• Hereditary Disease Foundation The Hereditary Disease Foundation is a non-profit, basic science organization dedicated to the cure of genetic disease.
• The Dana Alliance for Brain Research, whose Brain Awareness Week initiative helps to highlight the need for research on the brain.  
• Family Voices
• National Coalition for Cancer Survivorship
• National Organization for Rare Disorders
• Urologic Research and Care Coalition A lobbying  group whose purpose is to increase funding at NIH for urologic concerns including kidney cancer.  Their website has been updated to include the latest information on urology-focused research and the Congressional Appropriations process.
  
• American Brain Tumor Association
• Artificial Eye Information and Patient Support Page
• National Brain Tumor Foundation
• The Healing Exchange BRAIN TRUST, Inc. Support for people with mild brain injury or recovering from brain tumor surgery.
• Neuro-oncology Links (Brain and Spine Tumors)
• Brain Lab Novalis 
• BWH Department of Neurosurgery Radiosurgery/Radiotherapy Clinic
• U.S. National Institutes of Health
  • National Cancer Institute  Research on VHL and other hereditary kidney cancers.
    • Frederick Cancer Research Center Whose team was instrumental in cloning the VHL gene.
  • The National Eye Institute  Participates in VHL research under the general guidance of the VHL clinical research program run by the National Cancer Institute.
  • The National Institute for Neurologic Disorders and Stroke  Participates in VHL research on brain and spinal cord involvement.
  • NIH Office of Rare Diseases
  • National Center for Biotechnology Information (NCBI) NCBI creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information - all for the better understanding of molecular processes affecting human health and disease.