PATIENT INFORMATION

Navigating Chiari, syringomyelia and related disorders is hard, but you don’t need to do it alone.

Bobby Jones CSF is committed to providing current and accurate medical information to educate patients and their families. The Chiari Malformation & Syringomyelia Handbook is an excellent resource for patients and medical professionals. All educational material on this website is written and reviewed by our Scientific Education & Advisory Board Executive Committee before publication. This material is designed to help individuals understand the disorders and treatments in order to make knowledgeable decisions about their care. The information provided is designed to complement, not replace, the relationship between a patient and his or her physician and medical team.

If you have further questions, or you happen to think of some while doing your research, please feel free to contact us at any time!

More About the Disorders. Learn more about Chiari malformation, syringomyelia and related disorders such as Ehlers-Danlos syndrome and others. See these one-sheets on CM, SM, and EDS as a starting point.  The CM/SM Handbook is also an excellent resource for adults, children and their families, written by trail-blazing physicians in the field of Chiari malformation and syringomyelia.

What to Expect from Surgery. Patients, parents and doctors often have to decide whether surgery is a good option in each individual case. Learn more about this decision-making process, find a list of items to bring to the hospital for surgery and learn what to expect after a surgery.

Helpful Items for Chronic Pain. Struggling with chronic pain? This is a list of everyday items that can potentially help ease pain. Have a handy item you’d like to add? Tell us about it!

Parent Connection. Excellent resources for parents of a child with Chiari, syringomyelia or a related disorder and who’re not sure where to begin.

Patient Rights. As a patient or the parent of a patient, you have rights and it’s important to know them.

Join Our Online Support Community. When you’re dealing with difficult disorders like these, it’s important to know you’re not alone. Join our community on Inspire and get in touch with fellow patients, parents and caregivers. Ask questions, find advice and control your level of anonymity the entire time. For live, virtual support meetings check our Events page.

Find a Physician. Looking for a physician? You can use the tools on this page to help find a physician near you.

MORE ABOUT BOBBY JONES CSF

Find out more about our organization, and download a brochure (Ed: May 2019). You can also contact us at info@bobbyjonescsf.org at any time.

 

Looking for SUPPORT?

Visit our Events page for upcoming support meetings and join our community on Inspire for ongoing virtual support!

 

Want to get involved in RESEARCH?

Visit our I am A Researcher section for more information about our research programs and the different projects that you can get involved in, like the International Patient Registry:

Login To/Join the International Patient Registry for Chiari, syringomyelia and related disorders.

 

Was this information helpful? Please consider supporting us so that we can continue providing information to the public and advancing research efforts for the cure. Due to COVID19, we were forced to cancel our Spring and Summer fundraising events, your online support at this time is paramount.

 

 

 

Reviewed 09/2020

WHAT TO EXPECT FROM SURGERY

Patients, parents and doctors often have to decide whether surgery is a good option in each individual case. Learn more about this decision-making process, find a list of items to bring to the hospital for surgery and learn what to expect after a surgery.

LEARN MORE

HELPFUL ITEMS FOR CHRONIC PAIN

Struggling with chronic pain? This is a list of everyday items that can potentially help ease pain. Have a handy item you'd like to add? 
Tell us about it!

LEARN MORE
parent_connection1

PARENT CONNECTION

Excellent resources for parents of a child with Chiari, syringomyelia or a related disorder and who're not sure where to begin.

CONNECT
teacher_kids

CHIARI, SYRINGOMYELIA & OTHER RELATED DISEASES AT SCHOOL

Find helpful information on some of the conditions that impact patients and families struggling with Chiari and syringomyelia.

LEARN MORE
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EVENTS FOR PATIENTS & FAMILIES

CSF works very hard to ensure there is plenty
of programming available for patients and
their families going on throughout the year
and around the country.

LEARN MORE

PATIENT RIGHTS

As a patient or the parent of a patient, you have rights and it’s important to know them.

LEARN YOUR RIGHTS

FIND A PHYSICIAN

Looking for a physician? 
You can use the tools on this page to help find a physician near you

FIND A PHYSICIAN