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FTD Disorders Resources

There are many useful sources of information about frontotemporal degeneration designed to support persons affected with a form of these disorders, and their families and caregivers. A selection of resources is provided below:

The Association for Frontotemporal Degeneration (AFTD) provides:

  • a wide range of FTD information on their website
  • support for those affected with FTD and their families
  • an annual Education Conference for persons affected with FTD, their caregivers and families

THE BLUEFIELD PROJECT TO CURE FTD

The Bluefield Project was founded in 2010 by a family whose lives have been directly impacted by frontotemporal dementia. They provide funding to support research and provide resources to learn about frontotemporal dementia.

CUREPSP

CurePSP offers educational information on progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA), and provides links to support groups for these disorders. 

FTD DISORDERS REGISTRY

The FTD Disorders Registry has compiled a list of Frequently Asked Questions about the Registry that you can read online or print as a handout. FTD Registry Informed Consent examples for U.S. and Canadian participants are available to pre-read.

FTD talk

The FTD talk website is written by FTD researchers from around the world.  This website provides jargon free research updates for the whole FTD community, as well as a variety of FTD Factsheets.

The National Institutes of Health

The National Institute of Neurological Disorders and Stroke (NINDS) hosts an information page about FTD. The National Institute of Aging (NIA) has an online resource list, as well as a brochure that provides an overview of information and resources on FTD.