American Association of Neurological Surgeons
Supports the practice of neurosurgery in a number of ways. Its website covers neurosurgical educational opportunities including clinical news, annual meetings, legislative activities, practice management resources and patient information. It publishes Neurosurgery Today, a website for patients, families and professionals.
Brain Injury Association
Provides support through injury prevention, research, education and advocacy efforts. It has member organizations throughout the country, including one in Washington state.
The association publishes a bimonthly newsletter and the National Directory of Brain Injury Rehabilitation Services, which lists more than 350 facilities and programs. This website has a great deal of information on brain injury and a special section for kids and parents.
Congress of Neurological Surgeons
Promotes the public welfare by advancing neurosurgery through research and education. The website includes a list of patient education materials, a thorough glossary and useful links. Choose “Public” to find this information.
University of Washington Neurological Surgery
Provides updates and discussions about current and new faculty, ongoing research and clinical trials. The website includes information on diseases and abnormalities of the brain and spinal cord and on patient care.
The site also discusses UW’s medical centers and includes a calendar of the department’s educational meetings and trainings.
Brain and Spinal Tumors
American Brain Tumor Association
Provides support and brain tumor information to families and professionals. One of its major goals is to help people who are living with a brain tumor diagnosis.
The website includes clear information on a number of specific tumor types, new treatments and useful resources. Choose the ABTA KIDS button on the home page for a section written for children.
Candlelighters Childhood Cancer Foundation
A group of concerned parents of children with cancer started the foundation. It provides support, education and advocacy for children, families and providers. The website includes contact information for foundation partners around the country. It has materials from cancer facts to clinical trials, handling pain, shunts, complementary medicine, publications and much more. The site has special sections for kids and teens.
Children’s Oncology Group
This group is part of CureSearch, which unites the world’s largest childhood cancer research organizations, the Children’s Oncology Group (COG) and the National Childhood Cancer Foundation through their shared mission to cure childhood cancer.
The website provides information for patients and healthcare professionals, including clinical trials. The COG developed guidelines for clinicians to meet the ongoing healthcare needs of survivors of pediatric cancer.
National Brain Tumor Foundation
The site includes message boards, survivors’ stories, a newsletter, information on finding support groups, and announcements about national and regional conferences. Look for the toll free number on the home page — this is their patient information line.
National Cancer Institute, U.S. National Institutes of Health
Supports cancer research around the world. The website provides educational information on topics such as types of cancer, screening, treatment and coping with cancer. The site also lists research trials, cancer statistics and recent related news.
Pediatric Brain Tumor Consortium
The National Cancer Institute (NCI) formed the consortium in 1999 to improve treatment of primary brain tumors in children.
Ten academic centers and children’s hospitals in the United States cooperate to investigate new treatments for pediatric tumors of the central nervous system; neuro-imaging techniques; and markers and predictors of brain tumors in response to therapies.
The site includes summaries of research protocols.
Seattle Cancer Care Alliance
The SCCA is comprised of three organizations — UW Medicine, Fred Hutchinson Cancer Research Center and Seattle Children’s Hospital.
It offers a variety of treatment options, designed from the latest research, for malignant and non-malignant diseases. The site is a wealth of information on many types of cancer, research and patient resources.
Brain Injury Alliance of Washington
This group provides support, education and advocacy to survivors of brain injury and their families. The BIAWA publishes a newsletter and hosts an annual Gala Auction and Celebration to help raise awareness. This site has a great deal of information on brain injury and available resources for patients and families.
American Syringomyelia Alliance Project
Information about syringomyelia, Chiari malformation and related disorders, as well as message board forums.
The project sponsors an annual medical conference linking specialists in the field with those who are affected by these disorders. It also awards grants to professionals.
Chiari and Syringomyelia Foundation
The Chiari and Syringomyelia Foundation is built on leadership, vision and commitment to find a cure for Chiari malformation (CM), syringomyelia (SM) and related cerebrospinal fluid disorders. This site includes advocacy news, research advances and patient information.
Dr. Rich Ellenbogen: About Chiari and Syringomyelia (Chiari and Syringomyelia Foundation)
Seattle Children’s neurosurgeon Dr. Ellenbogen explains Chiari malformation.
UW Medicine Chiari Malformation Clinic
This site describes cerebrospinal fluid, Chiari malformation and syringomyelia in detail. It covers the problems these malformations present, their symptoms and how they are treated.
Seattle Children’s Craniofacial Center
Seattle Children’s Craniofacial Center specializes in the treatment of craniosynostosis and other complex craniofacial (face and skull) conditions. The team is involved in state-of-the-art research to identify causes and new treatments.
The section includes specific information on diagnosing, describing and treating craniosynostosis, cleft lip and palate, Apert Syndrome and numerous other craniofacial conditions.
American Academy of Neurology
An international professional association of neurologists and neuroscience professionals dedicated to providing care for those with neurological conditions. The academy supports professional development and ways to improve patient care. The website also includes research and legislative information.
This national, voluntary agency is dedicated to providing support to those with seizures through research, education, advocacy for innovative care, and services. The foundation provides its services at national and regional levels through nearly100 community affiliates.
University of Washington Regional Epilepsy Center
At the center, a skilled team of professionals uses state-of-the-art medical technology to diagnose and manage seizures and epilepsy. UW Epilepsy Services include Children’s Comprehensive Epilepsy Center.
Children’s Hydrocephalus Support Group
A parent group that provides support, education, current research and advocacy information through local support group meetings plus online support regardless of geographic location.
The Hydrocephalus Association
A national organization that provides support, education and advocacy for individuals, families and professionals. The website includes a newsletter and information about hydrocephalus, a list of resources, publications, sponsored events and Web links. Information is also available in Spanish.
Hydrocephalus Clinical Research Network
A consortium of leading children’s hospitals with a mission to dramatically improve the lives of kids suffering from hydrocephalus by conducting important and field-changing multicenter clinical research.
Spina Bifida Association of America
Provides information for education, advocacy and research projects. The association supports an annual conference and a national network of chapters that offer assistance to people with spina bifida and their families. The website has programs on prevention and living with spina bifida and resource links. Text is available in Spanish.