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
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.
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.
5. 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.
This French site for the organization, APAISER (APPEASE) offers European sufferers of syringomyelia a place to find
links, medical articles, information and support.
7. 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.
Connection International Parents Support Group
This group is chiari connection international for parents or
caregivers. Parents get together and express their hopes and fears.
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. Collaborative Hypertext of Radiology/U of Wisconsin--Information and MRI images of CM1
CHORUS is a "quick reference" hypertext. Links to thousands of images
5. 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
6. Ehlers-Danlos Syndrome--Information is good here, but some require payment
Requires you to join to view some material, most is free
7. Health Insurance Information
Many resources on health insurance information
8. Hyman-Newman Neurology and Neurosurgery of NY
Hyman-Newman Neurology and Neurosurgery of NY
9. Independent Living
Information On independent living
10. Italian CM/SM website
A comprehensive site for our Italian speaking Chiarians
11. Medical illustrations from Netter Images
Artist drawings and labeled pictures of parts of body and what they do.
12. 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
13. 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 Espaņol.
14. Pain scale
Chronic pain association's measure of function for people in pain. Contact information for ACPA
15. Urodynamics Testing--Explains What The Test Is Like
Preparations for testing ,explanation what is involved during testing along with diagrams and informational links.
16. Flight Assistance
Non-profit, volunteer organization dedicated to removing the burdens of
arranging long- distance transportation at times of personal and
17. Dr. Oro--Website
Dr. Oro Has Retired
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.
18. Lynxcare--Medical Record Summary, Consulting Services, Medication Review and Analysis, and Reminders
Lynxcare--Medical Record Summary, Consulting Services, Medication Review and Analysis, and Reminders
19. Example of Urodynamics Study
20. 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,
21. Anatomy of the Brain
Parts of the brain and important functions they serve.
22. Head Coverings/Scarves/Hats for Post Surgery Wear
Site full of caps, hats and scarf's for after surgery or chemo, very reasonably priced
23. Web MD---Chiari
Web MD about Chiari
24. Netter Images
Cranial nerve link shows what area of the head and neck the cranial nerves affect.
25. 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
26. 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
27. RX Assistance
28. Chiari and epilepsy/drop attacks
29. Patients Like Me
30. AARP Brain Games
"Games" that can help stimulate the brain from AARP
31. 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.
32. 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
33. Chiari NeuroSurgical Center
Chiari NeuroSurgical Center is focused on the diagnosis and management
Chiari, Syringomyelia, Craniocervical Instability, and related
disorders. They use a multidisciplinary approach for the care of their
patients. These independent physicians employed by other private
practices, medical institutions, and hospitals provide a network of
exclusive diagnostic and treatment programs designed to analyze and
treat the symptoms and ancillary conditions of thesedisorders.
The Chiari NeuroSurgical offers a wide array of treatment
options including telemedicine. Dr. Paolo Bolognese is the medical
director with over 18 years of expertise.
34. Financial Aid And Scholarships For Students With Disabilities
35. Support For Students With Dyslexia
36. Careers For Students With Disabilities
37. Support For Students With Down Syndrome
38. Resources For Orthostatic Hypotension