A diagnosis of frontotemporal dementia (FTD) can feel overwhelming, disorienting, and even isolating. But one truth matters above all: you are not alone. Across the world, individuals, families, care partners, and professionals are navigating this journey together—learning, adapting, and building supportive communities along the way. While an FTD diagnosis may answer some long-standing questions, it often introduces many new ones. It marks the beginning of a path that require

Frontotemporal dementia (FTD) is a complex brain disorder that affects behavior, language, and movement. Diagnosing it can be challenging because its symptoms often look like other conditions, such as depression or Alzheimer’s disease. Why Is FTD Hard to Diagnose? FTD develops slowly over time. Early signs like personality changes, trouble speaking, or poor decision-making can be subtle and mistaken for other problems. Because of this gradual onset, health care professionals

For anyone affected by frontotemporal degeneration (FTD) , including frontotemporal dementia (FTD) , behavioral variant FTD (bvFTD) , primary progressive aphasia (PPA) , progressive supranuclear palsy (PSP) , corticobasal degeneration (CBD/CBS) , or FTD with motor neuron disease (FTD-ALS) finding reliable information and support can be challenging. That’s why the FTD Disorders Registry  stands out as a key resource for patients, caregivers, family members, and the medical an

What Is FTD-ALS? FTD-ALS occurs when symptoms of both frontotemporal dementia and amyotrophic lateral sclerosis develop in the same individual. Each disease affects different parts of the nervous system. FTD primarily damages the frontal and temporal lobes of the brain. These areas are responsible for personality, behavior, decision-making, and language. ALS, on the other hand, attacks the motor neurons that control voluntary muscles, leading to progressive muscle weakness. B

As we approach Rare Disease Day on February 28 , we are reminded why raising our voices matters. Rare diseases may be individually uncommon, but collectively they affect millions of people worldwide and thousands of families here at home. They are our parents, siblings, partners, friends, coworkers, and neighbours. Behind every diagnosis is a family navigating uncertainty, searching for answers, advocating for care, and holding onto hope. For families affected by frontotempor