Overview
What is The Ftd Disorders Registry Llc?
The Ftd Disorders Registry Llc is a nonprofit organization situated in King of Prussia, Pennsylvania. Its primary mission is to establish a patient registry for individuals affected by Frontotemporal Degenerative Disorders (FTD), a neurological condition that often strikes people in their prime life and currently lacks a cure. The registry aims to empower caregivers, family members, and patients themselves by facilitating enrollment in clinical research. It serves as a centralized, international database and communication hub, keeping the FTD community informed about research and participation opportunities. By leveraging resources and partnering with various stakeholders, such as academic researchers, non-profits, government, and industry, the registry aims to improve our understanding of FTD and accelerate treatment development for all types of the disease. The organization has a team of five dedicated individuals working towards this cause.
Official website here: www.ftdregistry.org
Is The Ftd Disorders Registry Llc legitimate?
The Ftd Disorders Registry Llc is a legitimate nonprofit organization registered as a 501(c)(3) entity. The Ftd Disorders Registry Llc submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Heare are some key statistics you may want to consider:
Executive Compensation: $0
Professional Fundraising Fees: $0
Other Salaries and Wages: $443,464
For more financial information, click here
Official website here: www.ftdregistry.org
What is the mission statement of The Ftd Disorders Registry Llc?
The Ftd Disorders Registry LLC's mission is centered around facilitating research and accelerating treatment development for Frontotemporal Degenerative (FTD) diseases. This neurodegenerative condition, which currently lacks a cure, often affects individuals during their prime of life. The registry aims to empower the community of caregivers, family members, and those diagnosed with FTD by serving as a centralized, international database and communication hub for FTD clinical research. It also seeks to inform the FTD community about research and participation opportunities, positioning itself as a trusted, neutral, science-based non-profit voice. Additionally, the registry aims to improve the understanding of FTD and its impact through survey-based, longitudinal research with diagnosed individuals, family members, and caregivers. It also strives to enable inclusive and secure research designs, acting as a research partner for various stakeholders, including academic researchers, non-profits, government, and industry, all committed to enhancing the quality of life for those affected by FTD.
Official website here: www.ftdregistry.org
What is the revenue of The Ftd Disorders Registry Llc?
The Ftd Disorders Registry Llc's revenue in 2024 was $1,031,597.
Official website here: www.ftdregistry.org
Who are the executives of The Ftd Disorders Registry Llc and what are their salaries?
The average compensation at The Ftd Disorders Registry Llc during 2024 was $88,693. There are 5 employees at The Ftd Disorders Registry Llc.
Here are 7 key members and their salaries:
- Compensation: $0
- Related: $299,574
- Other: $27,277
- Compensation: $0
- Related: $343,000
- Other: $77,118
- Compensation: $0
- Related: $101,728
- Other: $0
- Compensation: $0
- Related: $215,668
- Other: $15,410
- Compensation: $0
- Related: $182,806
- Other: $25,570
- Compensation: $0
- Related: $239,433
- Other: $30,583
- Compensation: $76,816
- Related: $64,950
- Other: $25,561
Official website here: www.ftdregistry.org
Where can I find the form 990 for The Ftd Disorders Registry Llc?
The Ftd Disorders Registry Llc's most recent form 990 was submitted in 2024 and can be accessed here.
Official website here: www.ftdregistry.org
Learn more at the official website: www.ftdregistry.org
Mission Statement of The Ftd Disorders Registry Llc
The FTD Disorders Registry LLC, a non-profit organization, is dedicated to facilitating research and accelerating treatment development for Frontotemporal Degenerative (FTD) diseases. This neurological condition, which strikes individuals in the prime of their lives, currently lacks a cure. The registry's mission is threefold:
Firstly, The FTD Disorders Registry LLC aims to empower the community of caregivers, family members, and individuals diagnosed with FTD. By providing a centralized and international database, the registry serves as a communication hub, enabling enrollment in FTD clinical research.
Secondly, the organization seeks to inform the FTD community about research and participation opportunities. By acting as a trusted, neutral, science-based, non-profit voice, The FTD Disorders Registry LLC keeps the community updated on the latest developments and chances to contribute to research.
Lastly, the registry aims to improve the understanding of FTD and its impact through survey-based, longitudinal research with diagnosed individuals, family members, and caregivers. This research enables inclusive and secure research designs as a research partner for remote data collection. By collaborating with academic researchers, non-profits, government, and industry stakeholders, The FTD Disorders Registry LLC works towards improving the quality of life for those affected by FTD.
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Impact
October, 2024
The FTD Disorders Registry LLC plays a crucial role in addressing the challenges posed by frontotemporal degeneration (FTD), a devastating neurodegenerative disease. By providing a centralized patient registry, it empowers caregivers, family members, and individuals diagnosed with FTD. This empowerment fosters a sense of community and support among those affected.
The registry facilitates enrollment into FTD clinical research, serving as an international database that effectively connects researchers and participants. It informs the FTD community about research initiatives and opportunities for participation, acting as a trusted, neutral voice grounded in scientific integrity. This communication hub enhances awareness and encourages involvement in critical studies aimed at understanding and treating FTD.
Through longitudinal, survey-based research, the registry deepens the understanding of FTD impacts, gathering insights from those diagnosed as well as their families and caregivers. Additionally, it enables inclusive and secure research designs by partnering with various stakeholders, including academic researchers, nonprofits, government entities, and industry leaders. This collaboration is vital for leveraging resources and improving the quality of life for those affected by FTD.
Moreover, by advancing research efforts and accelerating treatment development, the registry aims to bring hope to individuals and families grappling with this condition, thereby contributing significantly to the broader fight against FTD.
This information is meant to be a general summary of The Ftd Disorders Registry Llc. Please take the time to review official sources before making any decisions based upon the content provided here.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2024.
- Investment Income: $85,154
- Gross Receipts: $1,031,597
Assets and Liabilities:
- Total Assets: $2,043,499
- Total Liabilities: $116,119
- Net Assets: $1,927,380
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Organization Details
Founding Year
2015
Principal Officer
Susan L-J Dickinson
Website
www.ftdregistry.orgNTEE Category
Code: G83 - Disease
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