FTD DISORDERS RESOURCES
There are many useful sources of information about frontotemporal degeneration (FTD) designed to support persons affected with a form of these disorders, 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
- a helpline - info@theaftd.org or toll-free 866-507-7222
- webinars and booklets to support families facing a new diagnosis, understanding the genetics of FTD, and how to talk to children about FTD as well as resources for caregivers
- a website exclusively for kids and teens, as a place to find information about FTD geared to their age level, and a place where they can share their thoughts and experiences
- 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.
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 information page about FTD disorders as well as a brochure that provides an overview of information about FTD and a resources list (beginning on page 27).