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


by CHANTEFER published 12 days ago

I am 65 years old, I think that the first tremors began just before I turned 50. I didn’t pay much attention to them, they were episodic and very s...

Discovering My OT

by NanaNancy published 4 months ago
No comment

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...

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.