THE FTD DISORDERS REGISTRY LLC
Programs
Program 1 [2020]
THE GOALS OF THE REGISTRY ARE TO - EMPOWER THE COMMUNITY OF CAREGIVERS, FAMILY MEMBERS, AND PEOPLE DIAGNOSED WITH FTD - FACILITATE ENROLLMENT FOR FTD CLINICAL RESEARCH AS A CENTRALIZED, INTERNATIONAL DATABASE AND COMMUNICATION HUB- INFORM THE FTD COMMUNITY ON RESEARCH AND PARTICIPATION OPPORTUNITIES AS A TRUSTED, NEUTRAL, SCIENCE-BASED NON-PROFIT VOICE- IMPROVE THE UNDERSTANDING OF FTD AND ITS IMPACT THROUGH SURVEY-BASED, LONGITUDINAL RESEARCH WITH PERSONS DIAGNOSED, FAMILY MEMBERS, AND CAREGIVERS - ENABLE INCLUSIVE AND SECURE RESEARCH DESIGNS AS A RESEARCH PARTNER FOR REMOTE DATA COLLECTION (CONTINUED ON SCHEDULE O)- LEVERAGE RESOURCES AS A PARTNER FOR ALL STAKEHOLDERS - ACADEMIC RESEARCHERS, NON-PROFITS, GOVERNMENT, AND INDUSTRY - WHO SHARE A COMMITMENT TO IMPROVING THE QUALITY OF LIFE OF THOSE AFFECTED BY FTDGeographiesNot indicatedDatesJan 1, 2020 – Dec 31, 2020Source990No causes providedNo populations provided–$653KFTD Community Empowerment Initiative
THE GOALS OF THE REGISTRY ARE TO - EMPOWER THE COMMUNITY OF CAREGIVERS, FAMILY MEMBERS, AND PEOPLE DIAGNOSED WITH FTD - FACILITATE ENROLLMENT FOR FTD CLINICAL RESEARCH AS A CENTRALIZED, INTERNATIONAL DATABASE AND COMMUNICATION HUB- INFORM THE FTD COMMUNITY ON RESEARCH AND PARTICIPATION OPPORTUNITIES AS A TRUSTED, NEUTRAL, SCIENCE-BASED NON-PROFIT VOICE- IMPROVE THE UNDERSTANDING OF FTD AND ITS IMPACT THROUGH SURVEY-BASED, LONGITUDINAL RESEARCH WITH PERSONS DIAGNOSED, FAMILY MEMBERS, AND CAREGIVERS - ENABLE INCLUSIVE AND SECURE RESEARCH DESIGNS AS A RESEARCH PARTNER FOR REMOTE DATA COLLECTION (CONTINUED ON SCHEDULE O)- LEVERAGE RESOURCES AS A PARTNER FOR ALL STAKEHOLDERS - ACADEMIC RESEARCHERS, NON-PROFITS, GOVERNMENT, AND INDUSTRY - WHO SHARE A COMMITMENT TO IMPROVING THE QUALITY OF LIFE OF THOSE AFFECTED BY FTDGeographiesNot indicatedDatesJul 1, 2024 – Jun 30, 2025Source990No causes providedNo populations provided–$633.3K
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