- Aneurysm & AVM Support
Established in 1995, this website is a place for survivors, their families, and those whom have lost loved ones to aneurysms or AVMs, to exchange experiences, pre- and post aneurysm or AVM diagnosis.
- Angiogenesis, Self Help & Diet | The Butterfly AVM Charity
An angiogenesis inhibitor is a substance that inhibits the growth of new blood vessels (angiogenesis). Some angiogenesis inhibitors are a normal part of the body’s control, some are administered as drugs, and some come from diet.
- AVM Survivors Network | Ben's Friends Network
An online patient community to connect with others struggling with AVM, with blogs, forums, chats, and ability to have personal pages and member groups to organize meet-ups.
- Befrienders Worldwide | United Nations
Befrienders International was an NGO in Special Consultative Status with the Economic and Social Council of the United Nations, created to provide emotional support and reduce suicide worldwide. They provide suicide hotlines, information about depression
- Ben's Friends Patient Support Communities
Network of dozens of online support communities for rare diseases, providing social networking communities for anything from Acute Disseminated Encephalomyelitis, Brain Aneurysms, Atrial Septal Defect, Ataxia, Arteriovenous Malformation, Fibromyalgia, Eag
- Brain Injury Association of America
National advocacy group to ” advance brain injury prevention, research, treatment and education and to improve the quality of life for all people affected by brain injury,” working to increase access to quality health care and raising awareness for brain
- Burgundy for Life | Support Group
Support group for avm and aneurysm survivors and their supporters on Facebook from around the world.
- Caregiving Cafe
An online support network to find solutions, information, resources, services, products, doctors, and many other important information in a timely manner for family caregivers.
A personalized “health social network,” where patients and their supporters can create a space to update family and friends during any health event, leave messages, and create support planners that allow them to coordinate helpful tasks for the patients.
Federal government website for comprehensive information on disability programs and services in communities nationwide with links to more than 14,000 resources from all levels of government (federal, state, local, academic, nonprofit), with information on
- Good Wishes Scarves
Their mission is simple: to provide free of charge, one beautiful It’s a Wrap© or Good Wishes Scarf to anyone experiencing the thinning or loss of hair as a result of illness or treatment.
- Health Resources | Disability.Gov
Link directory for resources related to health by compiled by the national government with ability to search through national, state, and both resources.
Mental health site which provides comprehensive information on many psychological disorders and psychiatric medications with support forums, online psychological tests, mental health news, and “mood journals” for users.
- Information & Tools for Stroke Survivors to Aid in Going Back to Work | National Stroke Association
Resources provided by Job Accommodation Network (JAN) for both stroke survivors going back to work and their employers.
- Invisible Disabilities Association
Resource/news hub and social networking community for Invisible Disabilities, and for people with various Invisible Disabilities to share their stories and experiences.
- Living with Traumatic Brain Injury | The Brain Fairy
Living with Traumatic Brain Injury (TBI) is an information center and a source of inspiration for those with an injured brain, and for their caregivers, families and friends created by a Traumatic Brain Injury survivor.
- Mid-Atlantic AVM/Aneurysm Support Group
Facebook group for the Mid-Atlantic AVM/Aneurysm Support Group in College Park, Maryland for residents of Mid-Atlantic area.
- National Directory of Brain Injury Services | Brain Injury Association of America
Directory of facilities and community-based services, brain injury specialists, state brain injury association, support groups, professional and legal services, and much more for brain injury support provided by the Brain Injury Association of America.
- National Organization for Rare Disorders
Federation of voluntary health organizations dedicated to helping people with rare diseases and assisting organizations in the United States that serve them through identification, treatment, and cure of rare disorders through educational programs, advoca
- No Strain on the Vein Foundation
No Strain on the Vein.com is a community of individuals, family and friends affected by arteriovenous malformations (AVM), aneurysms and cavernous malformation.
- Patient Organizations Database | NORD
Patient organizations database provided by the National Organization for Rare Disorders.
- Preparing Patients for Possible Neuropsychological Consequences After Brain Surgery | Barrow Quarterly
Over the years, many patients have expressed the opinion that some discussion of such possible sequelae before surgery would have been helpful to them. This article documents one patient’s eloquent statement about this issue.
- Resources and Tools | NORD
Resources and tools for people with rare diseases in categories such as financial and medication assistance, health insurance and Medicare/Medicaid, newborn/genetic testing, clinical trials, and government resources.
- SourceAmerica – Employing People With Significant Disabilities
SourceAmerica (formerly NISH), a national nonprofit, is the leading source of job opportunities for a dedicated and highly qualified workforce – people with significant disabilities.
- The Aneurysm and AVM Foundation
A charitable nonprofit organization aiming to provide support networks and medical care to those affected with brain aneurysms or vascular malformations which runs research grants, awareness walks, and various projects.
- The Brain Aneurysm Foundation
Comprehensive website for the Brain Aneurysm Foundation with sections discussing the symptoms, diagnosis, support groups, resources for families and friends, and events organized by the foundation.
- Young AVM/Aneurysm Survivors Group
Support group on Facebook for the younger generation of AVM and Aneurysm survivors to share and talk about problems and concerns unique to their generation.