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| Helpful Links |
Links To Chiari And Related Disorders Organizations and Support Groups
Note: In A Effort To Gain Worldwide Assistance
And General Awareness Some Websites Are Not Written In
English For A Translation Visit:
Google Translation---Translate Websites To Other Languages
1. Chiari & Syringomyelia Foundation, Inc. (CSF)
Dedicated to education and awareness within the local and world community. CSF also offers parent advocacy and strives
to raise funds to benefit research.
2. Conquer Chiari
Fact-filled site presenting education through articles, written interviews, personal stories, research updates, news and
information.
3. American Syringomyelia Alliance Project
Educational and supportive site featuring medical articles, message board, information for professionals and more, all
with an emphasis on advocacy and research funding.
4. The Ann Conroy Trust
Support and information to assist sufferers of Syringomyelia, Arnold Chiari Malformation and associated disorders.
Fundraising efforts assist research in the UK, and the site hosts information and a "hotline," as well.
5. AFACPA
AFACPA (Association of relatives and those affected with chiari and associated pathologies) The objective of this Spanish
site is to educate sufferers and their families about Arnold Chiari Malformation. AFACPA relies upon the participation of
professionals in this specialized field for the information they provide.
6. Assocazione Italiana Siringomielia e Arnold Chiari (AISMAC)
The objective of AISMAC is to support the patients of these pathologies and to offer through the web site updated
medico-scientific information, news, educational support, patients rights and national and international links.
7. http://www.apaiser.asso.fr/cgi-bin/index.php
This French site for the organization, APAISER (APPEASE) offers European sufferers of syringomyelia a place to find
links, medical articles, information and support.
8. World Arnold Chiari Malformation Association
Online support group as well as an informative website about Chiari
Links To Helpful Links To Other Organizations And Websites
1. American Society of Neurosurgeons Fact Sheet
American Society of Neurosurgeons Fact Sheet
2. Basilar Invagination
Cedars-Sinai description of Basilar Invagination, Symptoms,Causes and Risk Factors, Diagnosis an Treatment. Also Resource link to the Institute for Spinal Disorders.
3a. Chiari
Connection International Parents Support Group
This group is chiari connection international for parents or caregivers. Parents get together and express their hopes and fears.
3b. Chiari
Connection International Support Group
This is the main group from Chiari Connection International, all are welcome that suffer from chiari, syringomyelia or related disorder. You can even be a friend or a doctor that is interested.
4. Chiari info UK--UK support and info
UK Chiari Support and Information
5. Collaborative Hypertext of Radiology/U of Wisconsin--Information and MRI images of CM1
CHORUS is a "quick reference" hypertext. Links to thousands of images
6. Doctor ratings--rate your doctor, find info on a doctor
A resource for people who want to find a good Doctor or to voice your opinion positive or negative about a Doctor, very user friendly
7. Ehlers-Danlos Syndrome--Information is good here, but some require payment
Requires you to join to view some material, most is free
8. Health Insurance Information
Many resources on health insurance information
9. Hyman-Newman Neurology and Neurosurgery of NY
Hyman-Newman Neurology and Neurosurgery of NY
10. Independent Living
Information On independent living
11. Italian CM/SM website
A comprehensive site for our Italian speaking Chiarians
12. Medical illustrations from Netter Images
Artist drawings and labeled pictures of parts of body and what they do.
13. The Chiari Institute
Located in NY the Chiari Institute is globally known for it Excellent dedicated Doctors and experience staff, specializing in the treatment of persons suffering from Chiari Malformations and related disorders. Site has educational videos and information
14. National Institute of Health--Chiari
Defining Chiari Malformation, treatments, prognosis, and research. organizations for CM and related disorders. Additional recourse with link to neural tube defects Also in Español.
15. Pain scale
Chronic pain association's measure of function for people in pain. Contact information for ACPA
16. Pediatric Neurosurgery
Pediatric neurosurgery from Columbia hospital
17. University of Virginia Health System--General information about CM1
Pediatric site with information on Chiari Malformation
18. Urodynamics Testing--Explains What The Test Is Like
Preparations for testing ,explanation what is involved during testing along with diagrams and informational links.
19. Flight Assistance
Non-profit, volunteer organization dedicated to removing the burdens of arranging long- distance transportation at times of personal and community crisis
20. Laminectomy--Picture of Laminectomy (Cervical)
Picture of Laminectomy
21. Dr. Oro--Website
Chiari Care Center in Colorado, specialized center dedicated to the evaluation, care, and treatment of persons suffering from the Chiari I malformation, Syringomyelia, and related disorders.
22. Useful Link For Those Traveling To And From Home For Medical Care
The National Association of Hospital Hospitality Houses, Inc. is a non-profit corporation serving facilities that provide lodging and other supportive services to patients and their families when confronted with medical emergencies
23. Lynxcare--Medical Record Summary, Consulting Services, Medication Review and Analysis, and Reminders
Lynxcare--Medical Record Summary, Consulting Services, Medication Review and Analysis, and Reminders
24. Chiari One--Information On Chiari One
This easy to read website is dedicated to the early detection and treatment of Chiari Malformation Type I (CMI) and focuses on cases with herniations of zero to 5mm
25. Example of Urodynamics Study
Urodynamics Studies
26. Ronald McDonald House of Long Island
The House that love built, a home away from home, located close to several hospitals, provides stocked kitchens, laundry, playrooms, private bedrooms
27. Anatomy of the Brain
Parts of the brain and important functions they serve.
28. Wishes and Rainbows
Site for assisting people in times of need.
29. Head Coverings/Scarves/Hats for Post Surgery Wear
Site full of caps, hats and scarf's for after surgery or chemo, very reasonably priced
30. Miracle Wish For Chiari
Miracle Wish is to provide a camp for children with rare diseases.
31. Web MD---Chiari
Web MD about Chiari
32. Netter Images
Cranial nerve link shows what area of the head and neck the cranial nerves affect.
33. Job Accommodation Network
Job Accommodation Network, JAN's Searchable Online Accommodation Resource (SOAR) system is designed to let users explore various accommodation options for people with disabilities in work and educational settings.
34. BioMed Central
This free "open access" resource allows registered readers to easily access, save, print, and/or share full articles on a multitude of scientific and medical subjects. Choose areas of special interest, and this service will send weekly or monthly private email alerts to describe selected publications.
35. Spontaneous Spinal Cerebrospinal Fluid Leaks and Intracranial Hypotension Article
Article about Spontaneous Spinal Cerebrospinal Fluid Leaks and Intracranial Hypotension from The Journal of the American Medical Association
36. National Medical Hospitaly House Hub
"National Medical Hospitaly House Hub" has a location finder link on the left hand side of the homepage.
37. RX Assistance
38. Chiari and epilepsy/drop attacks
39. Patients Like Me
40. Chiari's Angels Foundation
41. AARP Brain Games
"Games" that can help stimulate the brain from AARP
42. Self Help Groups
A keyword searchable database of over 1,100 national, international, model and online self-help support groups for addictions,
bereavement, health, mental health, disabilities, abuse, parenting, caregiver concerns and many other stressful life situations.
Also lists local self-help clearinghouses worldwide, research studies, information on starting face-to-face and online groups,
and a registry for persons interested in starting national or international self-help group.
43. Team Chirstian
Team Chirstian is a Facebook page dedicated to creating awarness for Chiari, among other things. To read his entire touching story please visit
Team Chirstian's Story
44. The Angel Within Me Book---Rachelle Rose
The Angel Within Me was written by Rachelle Rose Briant Hruska and published by Mentor International Inc. in 2000.
ighting for a diagnosis and treatment for a supposedly rare brain disorder, is her main battle. As with many disorders, Rachelle has
been faced with a medical wall of disbelief. Her inspiration to write this book came when she discovered just how many others have
been going through this same battle due to lack of awareness and education on this disorder, Arnold Chiari Malformation. Although
the traumas in her life are vast, Rachelle discovers an angel within her, and finds the inner strength and wisdom she needs to
overcome life’s difficulties. Learn her secret. This book could change your life!
Please Note: Rachelle does not make money off of this book. Any proceeds left over either go to charity or giving away books to those
who cannot afford one. So, if you are unable to buy one, please contact her and she will mail you a free copy ASAP.
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