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Diseases Studied

The Rare Diseases Clinical Research Network is an NIH-funded research network of 20 active consortia or research groups working to advance treatment for diseases that are rare. Use the search tools on this page to find the diseases we currently study. You can reach out to the indicated consortia or research groups for more information on those diseases and studies underway.

This network focuses on clinical research and does not generally support clinical care outside of research activities. To learn about other rare diseases, please visit the Genetic and Rare Diseases Information Center (GARD), which is an NIH program that helps the public find reliable information about rare and genetic diseases. Their staff are specialists. Contact them at 1-888-205-2311 or email

All Diseases > Frontotemporal Dementia (FTD)

Frontotemporal Dementia (FTD) (FTD)

Disease Category: ALS and Related Disorders

A relatively rare form of dementia that primarily affects the frontal and temporal lobes of the brain. Frontotemporal Dementia (FTD) is characterized by changes in behavior, personality, and language skills. The symptoms can vary depending on which area of the brain is primarily affected. In some cases, individuals with FTD may experience significant personality changes, including a loss of empathy, decreased inhibitions, and socially inappropriate behaviors. They may also have difficulty with decision-making, problem-solving, and organizing tasks. Language problems are another common feature of FTD. Some individuals may struggle to find the right words or understand and comprehend language. They may also have difficulties with speech and producing coherent sentences.

Research groups studying this disease

ALS and Related Disorders
CReATe logo

Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe)