Rare dementia

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ORPHA:89043
Who is this for?
Show terms as
3Active trials6Specialists8Treatment centers1Financial resources

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Orphanet ↗NORD ↗

FDA & Trial Timeline

3 events
Apr 2025The Benefits of Nostalgia-Based Virtual Reality Brain Health Interventions on Nostalgia Tendencies, Life Satisfaction, Psychological Well-Being, Depression Levels, and Cognitive Function in Older Adults

National Taiwan Normal University — NA

TrialENROLLING BY INVITATION
Aug 2024Community Health Worker-Led Transition Support for Persons Living With Dementia and Caregivers

University of Texas at Austin — NA

TrialRECRUITING
Dec 2023Lemborexant for Insomnia in a Patient With Dementia: An N-of-1 Trial

Nova Scotia Health Authority — PHASE4

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Rare dementia.

3 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

3 recruitingView all trials with filters →
Phase 41 trial
Lemborexant for Insomnia in a Patient With Dementia: An N-of-1 Trial
Phase 4
Actively Recruiting
PI: Shanna C Trenaman, BScPharm, PhD · Sites: Halifax, Nova Scotia
N/A2 trials
Community Health Worker-Led Transition Support for Persons Living With Dementia and Caregivers
N/A
Actively Recruiting
PI: Jung Kwak, PhD (University of Texas at Austin) · Sites: Austin, Texas · Age: 18100 yrs
The Benefits of Nostalgia-Based Virtual Reality Brain Health Interventions on Nostalgia Tendencies, Life Satisfaction, Psychological Well-Being, Depression Levels, and Cognitive Function in Older Adults
N/A
Enrolling by Invitation
PI: Jong-Long Guo, PhD (National Taiwan Normal University) · Sites: Taipei, Taipei City · Age: 6599 yrs

Specialists

6 foundView all specialists →
SP
Shanna C Trenaman, BScPharm, PhD
Halifax, Nova Scotia
Specialist

Rare Disease Specialist

JP
Jung Kwak, PhD
Austin, Texas
Specialist

Rare Disease Specialist

JP
Jong-Long Guo, PhD
Taipei, Taipei City
Specialist

Rare Disease Specialist

AP
Adam L Boxer, MD, PhD
SAN FRANCISCO, CA
Specialist
PI on 2 active trials
RP
Rosanna Cardani, PhD
San Donato Milanese, Milan
Specialist

Rare Disease Specialist

PI on 1 active trial
BP
Blair Irvine, PhD
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Financial Resources

1 resources

Colcrys

AR Holding Company, Inc.

Colcrys — Contact AR Holding Company, Inc.

Unverified — confirm before calling
Patient Assistance
Manufacturer Program
Accepting applications

Travel Grants

No travel grants are currently matched to Rare dementia.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Rare dementia

Disease timeline:

New trial: Community Health Worker-Led Transition Support for Persons Living With Dementia and Caregivers

Phase NA trial recruiting. Community Health Worker (CHW) Guided Support

New trial: The Benefits of Nostalgia-Based Virtual Reality Brain Health Interventions on Nostalgia Tendencies,

Phase NA trial recruiting. Brain Health Nostalgic VR Program

New trial: Lemborexant for Insomnia in a Patient With Dementia: An N-of-1 Trial

Phase PHASE4 trial recruiting. Lemborexant 5 MG

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Rare dementia

Are there clinical trials for Rare dementia?

Yes — 3 recruiting clinical trials are currently listed for Rare dementia on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Rare dementia?

6 specialists and care centers treating Rare dementia are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Rare dementia?

1 patient support program are currently tracked on UniteRare for Rare dementia. See the treatments and support programs sections for copay assistance, eligibility, and contact details.