Those with Chiari malformation, syringomyelia and related disorders sometimes need help with tasks such as applying for social security benefits. The following is a collection of resources and valuable information that you may find helpful. Please consult a healthcare provider or legal professional before following any medical or legal advice found on these and any other websites.

AGING

Chronic Pain

  • American Chronic Pain Association - Since 1980, the ACPA has offered peer support and education in pain management skills to people with pain, family and friends, and health care professionals.
  • American Academy of Pain Management - The American Academy of Pain Management (the Academy) is a non-profit organization that educates clinicians about pain and its management through an integrative interdisciplinary approach.
  • Pain Management Specialists - Information on pain management for chronic back pain, pain management techniques, and pain management specialists
  • A World of Information on Pain - Pain.com is a unique online resource offering the most up-to-date pain and pain management information on a variety of different topics written by medical professionals for both the consumer and healthcare specialist.
  • List of Helpful Items for Those Living with Pain - "Here you will find a list of items that I have found to assist me as I have navigated a life of chronic pain. I am passing this forward in the hopes that something on the list might also help you gain some relief or happiness. I don't work for any of these companies, so I assure you I have no personal gain. I wish you the best in your journey!" - Ellen Icochea (Greater Metropolitan Washington Area Chapter)

Disability Information

  • Social Security Disability Benefits - Get answers to many questions about Social Security disability benefits including how to find out if you are eligible, how to apply and the difference between SSDI and SSI.
  • Benefits for People with Disabilities - The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities.
  • National Organization on Disability - The National Organization on Disability (NOD) is a private, non-profit organization that promotes the full participation of America’s 54 million people with disabilities in all aspects of life.
  • Office of Disability Employment Policy - Provides national leadership on disability employment policy by developing and influencing the use of evidence-based disability employment policies and practices, building collaborative partnerships, and delivering authoritative and credible data on employment of people with disabilities.

EDUCATION

EpILEPSY (SEIZURES)

  • Epilepsy Foundation - Trusted, family-led organization that works to accelerate research and educate individuals about epilepsy, what triggers seizures and much more.

Genetics Information

INSURANCE INFORMATION

Medical Equipment/HOME ADAPTATION

Medication

  • DrugWatch - Comprehensive web site database featuring extensive information about thousands of different medications and drugs currently on the market or previously available worldwide.
  • Prescription Drug Dependency - If you or your loved one is struggling with a dependency to medication, please visit this resource. *Note: This is a local Staten Island, NY (and surrounding areas) resource for those struggling with addiction. For other local resources such as this, please send an inquiry to info@csfinfo.org .
  • Drug Rehab Connections - We are a starting point to finding individuals and families help that are battling addiction
  • OxyContin Withdrawal - When a person stops abusing OxyContin, uncomfortable withdrawal symptoms like nausea and depression can set in, but help is available

NEUROLOGY

  • Neurology Now , an official publication of the American Academy of Neurology (AAN), provides patients and their caregivers with credible, up-to-the-minute, balanced coverage of the latest advances in neurology research and treatment.

Travel

  • Airports and Special Needs Travel: A Complete Guide - When travelling by plane, a good part of your trip is spent at airports. In fact, on many trips you spend more time at an airport than you do flying. When traveling with a child who has special needs every step you take needs to be very carefully planned.
  • Traveling with a Medical Condition - The essential guide to traveling with a medical condition
  • CheapOair Traveling with Disabilities - Resources for children and adults with physical disabilities who are going to be traveling. ( Thank you to Ms. Phillips' kids for finding such a wonderful resource for people with disabilities!)
  • Access-Able Travel Source - Provides information about: disabled travel, wheelchair travel, disabled holidays, disability travel, handicapped travel, accessible travel, vacations for disabled, and mature travel.
  • Disabled Travel Network - Accessible travel resources for wheelchair users and mobility-impaired people
  • Society for Accessible Travel & Hospitality - The Society for Accessible Travel & Hospitality (SATH), founded in 1976, is an educational nonprofit membership organization whose mission is to raise awareness of the needs of all travelers with disabilities, remove physical and attitudinal barriers to free access and expand travel opportunities in the United States and abroad.

Links Disclaimer: Links of interest to other websites from this location are provided as an added value by the Chiari & Syringomyelia Foundation, Inc. By accessing the links from this site, you will be leaving CSF's web site.  Although we have reviewed the information on these sites prior to creating the links, we are not responsible for the content of the sites going forward. Information on these website pages may become dated or change without notice, and we do not represent or warrant the information contained on these linked pages as complete or accurate.  Please be advised that you will no longer be subject to, or under the protection of, the privacy and security policies of CSF's website.  We encourage you to read and evaluate the privacy and security policies on the site you are entering which may be different from those of CSF, Inc.

Revised 4/2017

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