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Disclaimer: The material presented in this site is intended for public educational purposes only. The author is not offering medical or legal advice. Accuracy of information is attempted but not guaranteed. Before undertaking any diet, or health improvement program, you should consult your physician. The author is in no way liable or responsible for any bodily harm, physical, mental or emotional state of any patient reacting to any of the content on this site. has not examined, reviewed or tested any product or service mentioned herein. We are not being paid to advertise or promote any product or service mentioned herein. The links are offered strictly as examples of resources available. The site assumes no responsibility or liability of any kind related to the content of external sites or the usage of any product or service referenced. Links to external sites were live at the time of creation of the link. does not create content for or manage external sites. The information can be changed or removed by the external site’s administrators at any time and they are responsible for the veracity of their information. Links are provided to support our data and supply additional resources. Please report broken links to is not a charitable foundation. It neither accepts nor distributes donations or funds of any kind.

1. Mayo Clinic:

Minnesota: 507-538-3270 7 a.m. - 6 p.m. CST M-F.

Arizona: 800-446-2279 (toll-free) 8 a.m. - 5 p.m. MST, M-F

Florida: 904-953-0853 8 a.m. - 5 p.m. EST M-F.

2. Johns-Hopkins:

Maryland: 410-955-5000

U.S.:  1-855-695-4872 (toll free) 8 a.m. - 6 p.m. EST, M-F.

International:  +1-410-502-7683 7 a.m. - 6 p.m., EST, M-F.

3. Massachusetts General Movement Disorders Unit:

Boston: 1-855–644-6387 EST

4. USFC Medcial Center:

San Francisco: submit an online request. They prefer a doctor referral.

5. Cleveland Clinic:

Cleveland, Ohio: 866-320-4573  7 a.m. – 11 p.m. EST every day.

International:  +001 216-444-8184 7 a.m. - 5 p.m. EST

Weston, Florida: 877-463-2010  7 a.m. – 6 p.m. EST M-F

8 a.m. – 12 p.m. EST Sat. Closed Sun. and Holidays

Las Vegas, Nevada 702-483-6000

Toronto, Ontario, Canada: 888-507-6885  8 a.m. – 5 p.m. EST Mon. – Fri.

Abu Dhabi, UAE (2015) 216-445-2305

6. UCLA Medical Center:

Westwood, California: 310-794-1195.

Santa Monica, California: 310-319-5098

7. Northwestern Memorial Hospital:

Chicago, Illinois: submit an online request: nt

8. The Stanford School of Medicine:

Stanford, California: 650-723-6469

9. Rush University Medical Center:

Chicago, Illinois: 888-352-7874 8 a.m. - 5 p.m. M-F.

10. Tufts Medical Center:

Boston, Massachusetts: 617-636-5848 EST.

11. Barrow Neurological Center at St. Joseph's Hospital

Phoenix, Arizona: 1-877-227-7691. MST

12. IU Health Neuroscience Center

Indianapolis, Indiana: schedule an appointment online or call 844- 848-4325, 8 am – 4:30 pm, M-F.

13. Emory Healthcare Movement Disorders ent-disorders/

Atlanta, Georgia: 1-800-75-EMORY (404-778-7777), 7:00 am-7:00 pm, M-F EST.

14. Penn Medicine Neuroscience Center

Philadelphia, PA: 800-789-PENN (7366)

Request appointments online 24 hours/day, 7 days/week

15. Vanderbilt Department of Neurology

Nashville, Tennessee: physician referral only 615-936-0060.

16. University of Rochester Neuromuscular Disease Center

Rochester, New York: 1-888-661-6162. EST.

17. Thomas Jefferson University

Philadelphia, Pennsylvania:

18. Yale Movement Disorders Clinic rs/

New Haven, Connecticut:  203-737-5259 or  203-785-4085.

19. Lahey Hospital and Medical Center Movement Disorders Center

Burlington, Lexington, and Peabody, Massachusetts and southern New Hampshire: 781-744-1270.

20. Beth Israel Deaconess Medical Center, Parkinson's Disease and Movement Disorders Center. Boston, Massachusetts:


*This list is US-centric and we are happy to add international locations. Please share your recommendation by emailing it to

If at all possible, it is best to work with your local healthcare team. They can facilitate an appointment at specialty clinics. At times, it is necessary to seek an appointment on your own. Always communicate with your insurance company to find out whether a visit is covered and how you should proceed to get approval or submit a claim. Visit the clinic’s site and familiarize yourself with their procedures, costs, requirements, etc. Make certain you have copies of all pertinent medical records, scans, test results, etc. After your evaluation, you will be returned to your local healthcare team with recommendations for monitoring and management of your diagnosis.

The advantage to visiting a specialty clinic is two-fold: firstly, they are sent the most difficult diagnostic cases and are more likely to be knowledgeable about rare diseases. Mayo and Cleveland utilize an interdisciplinary approach to diagnosis. This means you will be seen by several specialists who collaborate to find answers. They have access to specialized testing equipment and processes. There are movement disorder clinics or hospitals with specialized neuromuscular departments. They are better able and have more resources to tackle hard cases.

It may be difficult to find a neuromuscular specialist knowledgeable about stiff-person syndrome in your location.

Mayo was the home of Moersch and Woltman and Dr. Dalakas researched from the National Institutes of Health.

Several online support groups have shared their stories and recommendations.

In terms of treatment, new studies are being conducted on immunomodulation therapy and hematopoietic stem cell therapy. Your neurologist will start with benzodiazepines and baclofen as a first line of treatment and move onto IVIG or plasmapheresis. Patient reports vary on the success of the various treatments. Finding the right combination of therapies takes time and patience. That is why it is critical to have a local physician who can work with you long-term.

Hopefully, by spreading awareness of what stiff-person syndrome is - and is not - more professionals will become educated in early recognition and effective treatment of the disorder.

When your local resources can’t help, it may be time to consult a specialty clinic or hospital.


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