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FTD Registry @EndFTDregistry

The Registry is an online database to collect information from those affected by all types of frontotemporal degeneration (FTD). FTDregistry.org Joined March 2016
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FTD Registry @EndFTDregistry

2 days ago

Amylyx’s ORION trial in PSP has ended after not meeting its goals. While the news is disappointing, every study adds knowledge that guides future research. Read more: ftdregistry.org/press/orion-tr… #endFTD #FTDresearch

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FTD Registry @EndFTDregistry

a week ago

FTD Disorders Registry data was featured in several posters at the Alzheimer’s Association International Conference this year in Toronto. Learn more and view the posters: ftdregistry.org/press/registry… #AAIC2025 #endFTD

FTD Registry retweeted
AFTDHope Profile Picture

The AFTD @AFTDHope

a week ago

Emma Heming Willis was interviewed Tuesday night on “Emma and Bruce Willis: The Unexpected Journey – A Diane Sawyer Special,” sharing her family’s experience of living with FTD. In a moving discussion, Mrs. Willis talked about: • The onset of symptoms in her husband • The…

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FTD Registry @EndFTDregistry

2 weeks ago

Research is the key to #EndFTD. Bruce Willis’s diagnosis raised awareness about FTD disorders impacting thousands of families every day. Progress will come through research. Together, we can find answers. ftdregistry.org/press/the-impo…

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

2 weeks ago

Anyone with an interest in FTD disorders research can join the Registry! Sign up here: ftdregistry.org

FTD Registry retweeted
AFTDHope Profile Picture

The AFTD @AFTDHope

3 weeks ago

A study that includes a number of AFTD grantees and Medical Advisory Council emeritus as authors analyzes over 4,000 proteins to look for potential biomarkers and better understand the biological mechanisms of #FTD. 🔬 Learn more: bit.ly/3GUBPlb

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

3 weeks ago

Thank you to everyone who answered questions about sleep challenges in last month's Quick Question. This month, we are asking about the types of health insurance coverage. To answer and see last month’s results, visit here: ftdregistry.org/quick-question… #FTDQuickQuestion #EndFTD

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FTD Registry @EndFTDregistry

a month ago

Researchers: Unlock the power of FTD data! Join the FTD Disorders Registry Researcher Portal to access de-identified data, request custom datasets, and explore collaboration opportunities. Start here: ftdregistry.org/for-researcher… #FTDresearch #EndFTD

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

a month ago

Anyone with an interest in FTD disorders research is welcome to join the Registry. Learn more at: ftdregistry.org/why-join/

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

a month ago

Thank you, #AAIC2025! We loved connecting with researchers, clinicians & advocates at our booth. Your curiosity and commitment to advancing #FTD understanding inspire us. Let’s keep moving toward earlier diagnosis and better care. #FTDRegistry #FTDResearch #EndFTD

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

a month ago

Join us for a free webinar on Wednesday, August 13, 2025 to explore the diagnostic journey for frontotemporal degeneration (FTD) and how we can improve detection and referral. Free CME and CEC credits available! Register here: events.zoom.us/ev/AlPqObBF8Hx… #endFTD #neurology

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FTD Registry @EndFTDregistry

a month ago

Great connecting with the team from @CureMaptFtd today! #AAIC2025

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

a month ago

Join Registry Director Carrie Milliard today at #AAIC2025 from 3:30–4:15 PM at Poster #480. She will share our work on the challenges families experience during the diagnostic journey for behavioral variant frontotemporal dementia (bvFTD) using data from the Registry. #EndFTD

FTD Registry retweeted
CureMaptFtd Profile Picture

Cure MAPT FTD @CureMaptFtd

a month ago

Come visit us today at poster #092 to learn more about @CureMaptFtd families as well as our booth #1729 at #AAIC2025

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

a month ago

We’re grateful to be able to share the FTD Disorders Registry's work at #AAIC2025! Stop by during today’s poster sessions to connect with Registry Director Carrie Milliard. We’re always eager to exchange ideas and insights. #endFTD #FTD #FTDResearch

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FTD Registry @EndFTDregistry

a month ago

Great to see Devon Chenette of @AlectorTx present at #AAIC2025! Her poster, "Genetic testing rates of individuals diagnosed with FTD and close biological relatives assessed in the FTD Insights Survey," highlights important findings made possible with data from the Registry.

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FTD Registry @EndFTDregistry

a month ago

Great to see the team behind @progranulin_nav by the @BluefieldProj at #AAIC2025! This resource raises awareness of GRN-specific trials and improves access to genetic testing and counseling. Bluefield is also a cofounder of the FTD Disorders Registry. #GRN #FTDResearch #endFTD

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FTD Registry @EndFTDregistry

a month ago

Now Live: FTD Disorders Registry Researcher Portal Access secure, deidentified data from real-world lived experience of #FTD disorders. Design studies. Estimate recruitment. Accelerate progress. Learn more: ftdregistry.org/for-researcher… #FTDResearch #Neuroscience #EndFTD #AAIC2025

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FTD Registry @EndFTDregistry

a month ago

The FTD Disorders Registry and @AFTDHope are back at Booth 521 today at #AAIC2025! Stop by! We look forward to connecting and sharing how we're working together to advance #FTDresearch. #EndFTD #FTD

FTD Registry retweeted
CureMaptFtd Profile Picture

Cure MAPT FTD @CureMaptFtd

a month ago

Come visit @CureMaptFtd at our posters today at #681 and #697 at #AAIC25 #AAIC2025 or at booth 1729 with the @alzassociation

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