Text Size: SMALL  LARGE

 
Resources

 

General 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.

GlobalGenes RARE Toolkits

GlobalGenes provides interactive toolkits on a variety of topics applicable to those with rare disease. For our group, useful toolkits include "Taking Control: Gaining Independence as a Young Adult with a Rare Disease," "Caring for Yourself as a Caregiver," and "Using Storytelling to Raise Awareness for Your Rare Disease." Toolkits continue to be developed. Please visit their site for the most recent list.

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.

 

Center for Parent Information and Resources serves as a central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs), so that they can focus their efforts on serving families of children with disabilities.

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.


 

Information on Cavernous Angiomas

 

Brain Imaging in Cavernous Angiomas

Written by radiologists at Scott and White Memorial Clinic and Hospital, this article is a primer for radiologists on diagnosing cavernous angiomas with CT and MRI. For the lay person, it provides many examples of cavernous angiomas in imaging.

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.

GeneReviews: Cerebral Cavernous Malformation, Familial

A technical article focusing on the genetic aspects of cavernous malformations. This is a regularly updated scholarly publication written by Angioma Alliance Chief Scientific Officer Dr. Amy Akers and Angioma Alliance Scientific Advisory Board Member Dr. Leslie Morrison. 


 

Anatomy

 

Anatomy of the brain

Interactive tour of the brain

Anatomy of the spine

For Fun: Pinky and the Brain


 

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.

Seizure 101

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.


 

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.

GenesInLife.org

Genes In Life is an educational website that teaches people about genetics, how genetics impacts health, and how those with genetic conditions can live their best lives. This site also delves deeper into things like diagnostic testing, insurance, and working with advocacy groups and family to improve health.

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.

National 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.

CLOVES Syndrome

CLOVES stands for Congenital Lipotamous Overgrowth with Vascular Malformations and Structural/Skeletal Abnormalities. It is an extremely rare disease with only 50 patients identified as of August, 2010.


 

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.

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 Society

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.

Well Spouse Association

Support for spousal caregivers.

Family Voices

A national grassroots clearinghouse for information and education concerning the health care of children with special health needs.

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

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

 

Page last updated 8.19.2016