The Tin Man

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February 28

National Organization for Rare Diseases

Stiff Person Syndrome (Open Group)

SPS Matters (Closed Group)

SPS Action Network

SPS UK and Ireland

SPS UK and Ireland Support Group Website

SPS Moersch and Woltman (Closed Group)

SPS Support Group Brasil

Stiff Person Syndrome Strong Support Group

SPS: A Diary

Russia HSCT for MS and Autoimmune Diseases

HSCT Chicago (Closed Group)

Living Forward with SPS Personal Blog

INSPIRE  for rare diseases (Website)

Stiff Person Syndrome Network (Website)

Coping with a rare disease can be very confusing and isolating. Sometimes it helps to connect with others who are traveling the same path.  You may be able to find a local support group. It may not be SPS specific, but you will meet others who are coping with chronic debilitating conditions.

It is also possible to reach out to virtual support groups. There are two main types of Facebook groups: open and closed. Open means the general public can see and respond with comments. They are usually moderated to keep the threads on topic. In closed groups, only members of the group can see and respond to the posts. You must have a Facebook account to access the groups.

Stiff-person syndrome related communities and pages are listed below. The Tin Man does not endorse or support the content, participants, or individuals administering the sites. You should always consult a medical professional before following the advice of any individual or information found on any forum.

Be careful when posting personal information on public sites. Friends, family, coworkers, your insurance company, or physicians may also see what you post, even if you think your personal settings are designated “private.”

The Internet is full of predators. There have been cases of hacking where an individual assumes your photo and a version of your name for the purposes of conning people into divulging personal information and stealing money in the guise of charity, contests, or selling fraudulent treatments or cures. There are no miracle cures for stiff-person syndrome and anyone who makes this claim is lying. Make certain you know who you are talking to, especially via direct message.

Never divulge personal financial information on the Internet or to anyone who contacts you via the Internet.