Medical Resources and Research Citations for men, women, and children living with Syringomyelia & Chiari. Resources found here are for medical professionals, members, caregivers, and family members.
Please note: This page is still undergoing development as we continue to add information. Specifically the citation section is currently underway. For now please enjoy the resources we have available.
Links to Resources for
AARP- offers resources to caregivers and offers a resource center.
Christopher & Dana Reeve Foundation-offers free services and caregiver support.
Caregiver Action Network-offers multiple services for caregivers of those who are chronically ill.
Well Spouse-supports spouses or partners of those who are disabled or chronically ill.
National Caregivers Library-great source of free information for caregivers.
National Respite Coalition Network-helps parents, caregivers, and professionals get a break using respite services in their local area.
Links to Resources for Children
IDEA Partnership-a collaboration of over 50 national organizations working to improve educational outcomes for youth and children with disabilities.
Office of Special Education and Rehabilitative Services (OSERS)-a division of the US Department of Education serves children, youth, and families with disabilities.
Financial Aid: Resources for students with disabilities
Going to College-provides resources for high school students going to college with disabilities.
NORD-National Organization for Rare Disorders-provides resources for children, adults, and families with rare disorders
Links to Medical Resources:
National Institute of Health
FDA-US Food and Drug Administration
The New England Journal Of Medicine
Medscape Publications on Syringomyelia and Chiari
JAMA- The Journal of the American Medical Association
Rare Disease Report -excellent resource for the latest news and conference information. Publishes articles written by leaders in the rare disease community and publishes a resource guide for physicians and nurses.
Take a look and see what is happening in Spain at the Institut Chiari & Siringomielia & Escoliosis de Barcelona!
Links to Support Networks of Associated Conditions/Complications of Syringomyelia & Chiari Malformation