Every April, National Volunteer Week shines a spotlight on the people who give their time to strengthen communities across Canada. For organizations focused on rare diseases like FTD (Frontotemporal Dementia), volunteers aren’t just helpful, they are essential. FTD is a complex and often misunderstood condition. Unlike more widely recognized forms of dementia, it tends to affect younger individuals and presents with changes in behavior, personality, and language. Because of t

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