The U.S. government provides scientifically accurate, plain English summaries about neurodegenerative disorders. Although the content across these sites may overlap to some extent, each one has a slightly different emphasis based on their mission. For example, the National Institutes of Health (NIH) focuses a bit more on the latest research, while the Centers for Disease Control and Prevention (CDC) provides more information about risk reduction.
Centers for Disease Control and Prevention
National Institute on Aging
Alzheimers.gov
There are many nonprofit organizations that are dedicated to supporting diagnosed people and their families. In most cases these organizations offer free services, such as consultations, unbiased referrals to trusted service providers, and support groups for patients and/or caregivers. They also provide opportunities for people to get involved as advocates for their causes. These focused organizations can often provide more detailed and useful information about specific disorders.
ALS Association
The ALS Association is the leading organization for supporting people with amyotrophic lateral sclerosis (ALS).
The Association for Frontotemporal Degeneration
The Association for Frontotemporal Degeneration (The AFTD) specializes in improving diagnosis, treatment, and support for patients with the many forms of frontotemporal dementia (FTD). Since these are rare diseases, The AFTD’s specialized expertise is particularly valuable for addressing the unique needs of their patient community.
Alzheimer’s Association
The Alzheimer’s Association is the leading organization for Alzheimer's disease (AD) patient education and support. They have dozens of local chapters that can provide in-person support.
CurePSP
Progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) are primary tauopathies that are specific forms of FTD. CurePSP is the leading patient advocacy group for these specific disorders.
I Am ALS
I Am ALS is a relatively new patient advocacy organization that is raising awareness and attracting new sources of support for the ALS community.
Lewy Body Dementia Association
The Lewy Body Dementia Association is the leading organization for support of people living with Lewy Body dementia (LBD).
Michael J Fox Foundation
The Michael J Fox Foundation supports Parkinson’s research and provides useful educational materials for those living with Parkinson’s disease.
Parkinson’s Foundation
The Parkinson's Foundation provides extensive support to people living with Parkinson’s disease.
Women’s Alzheimer’s Movement
The Women’s Alzheimer’s Movement (WAM) provides information about brain health and AD that is tailored specifically to women, who are twice as likely to experience AD than men.
Unfortunately, clinical study recruitment is a significant barrier in the race to find better treatments for neurodegenerative disorders. Volunteering for a clinical study is therefore a powerful way for ordinary folks to make a real difference. There is an especially significant need for increased diversity in clinical studies. It’s important to note that researchers often need healthy volunteers and unaffected family members, too; you don't need to have a disorder to contribute.
Brain Health Registry
This registry is managed by the University of California, San Francisco. Participants are asked to periodically complete online surveys and cognitive tests to help researchers understand how the brain changes as we age. Participants may also choose to contribute blood or saliva samples, which can generate additional insights. This registry is not limited to any particular brain disorder and therefore may help scientists to learn about healthy aging as well as the relationships between disorders.
Alzheimers.gov Clinical Trial Finder
This search tool is managed by the U.S. government and is very easy to use. Users can find and connect with clinical studies that may be a good fit for them.
Fox Trial Finder
This clinical trial search tool is sponsored by the Michael J Fox Foundation, which focuses primarily on Parkinson’s disease. The trial finder also includes a handful of closely related rare disorders such as Lewy Body dementia (LBD), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA).
FTD Disorders Registry
The FTD Disorders Registry supports research into all forms of frontotemporal dementia (FTD). People living with FTD, their family members, and friends are encouraged to enroll. Participants are asked to periodically complete online surveys and cognitive tests to help researchers understand the unique ways in which FTD can change the brain over time. Participants may choose to contribute blood or saliva samples and can opt in to receive emails about new studies that might fit their profile.
TrialMatch
TrialMatch is sponsored by the Alzheimer’s Association. Users can browse for clinical trials that are currently seeking volunteers. Users can also sign up to get email notifications for studies that might be relevant, based on their profile.