Chiari Connection International

Chiari Connection International

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.


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.

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. 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 community crisis

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

Urodynamics Studies

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, private bedrooms

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 educational settings.

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 Association

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
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