Syringomyelia and Chiari Support for those affected and their caregivers
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Although Syringomyelia and Chiari Malformations are rare, there are support groups out there. I had a difficult time finding information, sites with information specific to the disease that I am dealing with. I hope that the below links help reduce the amount of it takes for you to find the help you or your loved one needs.
If you know of a support network that isn’t listed below, please send us the information using our contact form.
Many of the below organizations are Non-Profit 501c3 groups. Not all information is included, so please click on the links for further details.
There are several groups and pages on Facebook for starters.
- Blue Butterflies (Syringomyelia Awareness) – Blue Butterflies is a group to help spread awareness of Syringomyelia.
- Chiari & Syringomyelia Support by ASAP – Mission – to improve the lives of people with Syringomyelia, Chiari malformation and related disorders while we find the cure.
- Fighting Syringomyelia – If you suffer from it or you know people who suffer then join the cause. If you suffer any problem related to your spine or brain join the cause.
- Hog Wild Arkansas Chiari/SM Support Group – This Group is for people who have Syringomyelia or Chiari diseases that live in Arkansas or have family members that live with in Arkansas who are willing to support and learn about the disorders that their family members has.
- NORD (National Organization for Rare Disorders – The National Organization for Rare Disorders (NORD) is a federation of individuals and patient organizations providing advocacy, research support, educational services, and patient assistance programs on behalf of the rare disease community.
- Raising Awareness for Syringomyelia and Chiari – This page is to help raise awareness for two chronic spinal disorders (both of which I have) as well as other related disorders and spinal conditions.
- Syringomyelia & Chiari Network – A place to share, learn, and support each other.
- Syringomyelia Surgery Survivor Support Group Cause – This page is to serve as a support group for Syringomyelia survivors and to develop so that communications and support are easy.
- Syringomyelia & Syrinx’s – For all those people unlucky enough to have, or have had, Syringomyelia or a syrinx of some sort.
- Worldwide Syringomyelia & Chiari Task Force Inc. – The purpose of this group is to provide our members the ability to talk with other members who have Syringomyelia or Syringomyelia & Chiari to get support & share knowledge.
- WSCTF Support for Families & Caregivers – This group was started by Worldwide Syringomyelia & Chiari Task Force Inc. to provide a safe haven of support for family members, caregivers, and loved ones of children and adults living with Syringomyelia and/or Chiari.
- WSCTF Support for Parents & Children – This is a group dedicated to supporting families dealing with pediatric Syringomyelia. This is your safe haven to come for ongoing support; you do not have to battle this alone!
Several websites are available as well.
- American Syringomyelia & Chiari Alliance Project, Inc. (ASAP) – Online support groups, telephone support groups, local support groups and more.
- ASAP Online Message Board – Share coping tips and find support from others who are affected by SM, CM and related disorders. Our message board is experiencing problems. We are working to correct the issue. Thanks you for your understanding and patience. We hope to resolve the issue as quickly as possible.
- AZ Syringo & Chiari Support Group – We offer care, friendship & support by touching the lives of Arizonian’s affected by Syringomyelia (SM), Chiari (CM) & related disorders.
- Canadian support for Syringomyelia (syrinx/ SM) Network – around the worldwide. www.syringomyelia.ca & www.smawareness.ca – is a place to share, learn and support.
- Carion Fenn Syringomyelia & Chiari Social Network – A unique Virtual Community: a place to share, learn & Support each other because Together We Are Stronger (R).
- Chiari Australia – This site has been created to help those suffering from Chiari Malformation, Syringomyelia and Related Disorders.
- Chiari Online Support Group – Patients and survivors of Chiari (types I-IV), here for your support,
- Chiari & Syringomyelia Foundation – Built on leadership, vision and commitment to find a cure for Chiari malformation (CM), Syringomyelia (SM) and related disorders, was founded in October 2007.
- Daily Strength Support Forum – A support forum that not only has people suffering from Syringomyelia but also includes doctors that join discussions.
- MD Junction – A community of patients, family members and friends dedicated to dealing with Syringomyelia, together.
- NeuroTalk Syringomyelia Online Support Forum – An online forum where people suffering from Syringomyelia can share stories and advise.
- NORD (National Organization for Rare Disorders – a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
- Syringomyelia Ireland – This is a Syringomyelia Self Help Group homepage. The website for people with Syringomyelia in the Republic of Ireland.
- Syringomyelia Medical Advocacy – Establishing advocacy programs worldwide by having their team and members educate nurses and physicians about the disease.
- WSCTF Support for Families & Caregivers – A nonprofit 501c3 organization with a mission to educate the world about Syringomyelia. We are the only organization in the United States led by physicians and nurses to stand behind Syringomyelia as a disease.