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Did you know that frontotemporal degeneration (FTD) is considered one of 7,000 rare diseases? An estimated 60,000 people have been diagnosed with this devastating form of dementia, which is NOT Alzheimer’s. Currently, there are no known treatments and no cures. #EndFTD Originally called Pick’s disease, FTD disorders include several types including behavioral variant FTD (bvFTD), primary progressive aphasias (PPA), corticobasal degeneration (CBS), progressive supranuclear palsy (PSP), and FTD with motor neuron disease (FTD-ALS). Whatever you call it, the symptoms involve changes in behavior, issues with movement, or problems with language. FTD is often misdiagnosed as Alzheimer’s disease, depression, Parkinson’s disease, or mental illness. The average time to an "accurate" diagnosis is about 3.6 years, but a definitive determination can only be made by an autopsy. A fatal disease, FTD progresses steadily and sometimes rapidly, ranging from less than 2 years to more than 10 years. Eventually, some individuals with FTD will need 24-hour care and monitoring at home or in an institution. The FTD Disorders Registry is an online database that collects information from those affected by all types of FTD. For more information about the Registry, please visit our website at https://ftdregistry.org/