Welcome - Primary Orthostatic Tremor (POT) Community

What is Primary Orthostatic Tremor (POT) ?

“Primary Orthostatic tremor is a very rare progressive brain disorder often misdiagnosed as Parkinson’s. The tremor is usually five times the frequency of Parkinson’s and it is very difficult to observe, the tremor needs to be confirmed electrically via an EMG test to confirm its severity. The tremor makes it almost impossible for the patient to stand even for a few seconds.”

Source: NTF UK POT Support Blog

Primary Orthostatic Tremor (POT) Resources

More members stories

Latest Member Stories

Discovering My OT

by NanaNancy published 3 months ago
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I am so relieved to find out that there are a few others like myself that experience these life-changing loss of balance and confidence. This foru...

I’m nearly sixty and I’ve been suffering from POT for about ten years

by anon90e2d4b5 published 5 months ago


When I was more or less fifty, I started feeling some light vibrations in my lower limbs while I was standing at the stove. Such events w...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.