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General Information Resources
NORD
(National Organization for Rare Disorders)
NORD is “committed to the identification, treatment and cure of rare disorders
through programs of education, advocacy, research and service.” The site includes
a rare disease database with information on over 1100 rare disorders as
well as listings of organizations and support groups.
MedlinePlus
Sponsored by the National Library of Medicine, provides access to consumer
information on hundreds of disorders and conditions. Includes a medical
encyclopedia, dictionary, directories, news, and clinical trials.
PubMed
PubMed, a service of the U.S. National Library of Medicine, is the
world’s largest searchable medical database. It indexes over 15 million
articles from more than 480 medical journals. Abstracts (summaries) of
the articles are included and sometimes a link to the full text of the
article is available. For help using PubMed link to the
PubMed
Tutorial.
March of Dimes
Information on pregnancy and newborn health defects and genetics.
National Dissemination Center for
Children with Disabilities
Funded by the Office of Special Education Programs, NICHCY is the
national information center that provides information on disabilities
and disability-related issues, with a special focus on
children and youth from birth to age 22.
National
Institute of Neurological Disorders and Stroke
NINDS is one of the more than two dozen research
institutes and centers that comprise the National
Institutes of Health (NIH). NINDS conducts and supports
research on brain and nervous system disorders.
How to evaluate health information on the Internet
This fact sheet from the National Cancer Institute helps
consumers ask questions and evaluate health information.
Information on Cavernous Malformations
Brain,
Cavernous Angiomas
Written by radiologists at Scott and White Memorial Clinic and
Hospital, this article is one of the best summary articles we’ve
seen. It was written for medical professionals and covers a wide
range of the most recent cavernous angioma medical information.
This would be a good article to take to medical appointments with
physicians who might not be familiar with the illness.
Cavernous Malformations
Written by the staff of Massachusetts General Hopsital/Harvard
Medial School Neurosurgery Department.
Cavernous Malformations of the Brain (Cavernomas)
From the Toronto Brain Vascular Malformation Study Group.
Children's Hospital Neurosurgery - Cavernous Angioma FAQ
This overview from the Boston Neurosurgical Foundation focuses on
cavernous angioma in children.
GeneReviews: Cerebral Cavernous Malformation, Familial
A technical article focusing on the genetic aspects of cavernous malformations.
Anatomy
Anatomy of the brain
Interactive tour of the brain
Anatomy of the spine
Symptoms and Diagnosis
Seizure Types
Clear and concise information from the British Epilepsy Association.
Neurologic Symptoms and Examination
From the highly regarded Merck Manual, 2nd Home Edition
Online.
Computed Tomography (CT or CAT Scan) and
Magnetic Resonance Imaging (MRI)
RadiologyInfo presents current and accurate patient information
about head and spine CT scans, head and spine MRI, MRA, functional
MRI of the brain, and other diagnostic tests. Related video clips
explain the basics.
Cerebral Angiography
How and why the test is performed and risks involved.
Management
Partners Against Pain
Although developed by a pharmaceutical company, this site offers
comprehensive information for patient, physicians, and institutions
about pain control, including alternative therapies. The site also
includes links to other pain support organizations.
Medical Treatment of Seizures
General information on seizure medications from the Epilepsy Foundation.
MedlinePlus Drug Information
A guide to more than 9,000 prescriptions and over-the-counter
medications that can be searched by the generic or brand name of the
drug.
Preparing Patients for Possible Neuropsychological Consequences
After Brain Surgery
Written by a neuropsychologist at the Barrow Neurological Institute,
this article focuses on subtle problems such as attention or memory
deficits that can sometimes accompany even successful cavernous
angioma surgery.
Genetics
Genetics Home Reference
From the National Library of Medicine, the site presents consumer
information about genetic conditions and the genes or chromosomes
responsible for those conditions.
Genetic Alliance
The Genetic Alliance is “an international coalition comprised of
more than 600 advocacy, research and healthcare organizations that
represent millions of individuals with genetic conditions and their
interests”. The site offers disease information, genetics
resources and advocacy tools.
GeneTests
A publicly funded medical genetics information resource developed
for physicians, healthcare providers, and researchers. Includes
disease summaries, an international index of genetic laboratories,
and a directory of genetics and prenatal diagnosis clinics.
Nation Society of Genetic Counselors
Links to seven professional genetics organizations.
Other Conditions Involving Cavernous Angioma
Von Hippel-Lindau Disease
VHL is a genetic condition involving the abnormal growth of blood
vessels in certain parts of the body. Capillaries “knot” together to
form benign growths known as angiomas. These may develop in the
retinas of the eyes (retinoangioma), the brain (cerebellar hemangioblastoma)
or in other parts of the body.
Sturge-Weber Syndrome
Sturge-Weber Syndrome is a congenital, non-familial disorder characterized
by a facial birthmark and neurological abnormalities. Excessive blood
vessel growth on the surface of the brain is typically located on
the back (occipital) region of the brain, often causing seizures.
Hemangioma-Thrombocytopenia Syndrome
According to NORD, Hemangioma-Thrombocytopenia Syndrome (also
known as Kasabach-Merritt Syndrome) is a “rare disorder characterized
by an abnormal blood condition in which the low number of blood
platelets causes bleeding (thrombocytopenia). The thrombocytopenia
is found in association with a benign tumor consisting of large,
blood-filled spaces (cavernous hemangioma). The exact cause of this
disorder is not known.” There is no particular support group for
this disorder listed on either by NORD or Genetic Alliance.
Related Disorders and Organizations
Vascular Birthmarks Foundation
VBF provides support and informational resources for individuals
affected by hemangiomas, port wine stains, and other vascular
birthmarks and tumors.
National Organization of Vascular Anomalies
NOVA is dedicated to providing information and assistance on the
diagnosis and treatment of hemangioma, vascular malformation, port
wine stain (PWS), Klipple Trenaunay Syndrome (KTS) Sturge-Weber Syndrome
(SWS), PHACES, Kaposi Form Hemangioma Endothelioma (KHE), pyogenic
granuloma, vascular birthmarks, hepatic hemangioma, and all related
syndromes.
Maffucci's Syndrome
Maffucci’s Syndrome is a rare congenital disorder characterized by
enchondromas (benign cartilage tumors), bone deformities and venous
malformations. The American Association of Multiple Enchondroma
Diseases (AAMED) is the source for news and information about this
and related disorders.
National Stroke Association
The NSA mission is to reduce the incidence and impact of stroke. The
organization provides education, services and community-based
activities regarding prevention, treatment, rehabilitation, and
recovery.
Different Strokes
A United Kingdom Charity run by stroke survivors for stroke survivors.
It helps younger survivors optimize their recovery, take control of
their lives, and regain as much independence as possible by offering
rehabilitative services, information, advice and support.
Pediatric Stroke Network
The Network offers information, assistance and support to family,
friends and survivors of childhood stroke. This site includes helpful
links, a chat room, and a support network mailing list.
National Brain Tumor Foundation
Provides information and support for brain tumor patients, family
members and healthcare professionals.
Children's Brain Tumor Foundation
This website provides an array of information and resources to
assist in accessing expert care to ensure quality of life for the
child with a brain or spinal cord tumor.
Support Groups and Referral
Ask the Doctor: The Neurology and Neurosurgery Forum at Med Help
This site allows you to post questions on a public forum and receive
answers from neurologists and neurosurgeons at the Cleveland Clinic.
The Cleveland Clinic is rated one of the best hospitals in the U.S.
by US News and World Report and has a national reputation for quality
neurosurgical care and training. The forum archives are available
online and date back to 1997.
MUMS National Parent to Parent Network
Matches parents with other parents whose children have the same or
similar condition.
Family Voices
A national grassroots clearinghouse for information and education
concerning the health care of children with special health needs.
Sibling Support Project
A national program dedicated to the interests of brothers and sisters
of people with special health and developmental needs. The Project’s
primary goal is to increase the availability of peer support and
education opportunities for siblings.
Health Information Resource Database
Puts health professionals and consumers with health questions in
touch with those organizations that are best able to provide answers.
Sponsored by the Office of Disease Prevention and Health Promotion.
Information on Healthcare Professionals and Hospitals
AMA Online Doctor Finder
American Association of Neurological Surgeons
Congress of Neurological Surgeons
American Academy of Neurology
American Psychiatric Association
American Psychological Association
National Association of Social Workers
American Association for Marriage and Family Therapy
U.S. News & World Report Best Hospitals
American Hospital Directory
American Board of Medical Specialties
The ABMS, a not-for-profit organization comprising 24 medical
specialty boards, is the pre-eminent entity overseeing physician
certification in the United States
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