Overview
What is National Fabry Disease Foundation?
The National Fabry Disease Foundation is a nonprofit organization situated in Hillsborough, North Carolina. Their primary mission is to identify, diagnose, and treat individuals with Fabry Disease at an early stage to prevent life-threatening consequences and improve their quality of life. They achieve this through various educational programs, such as their informative website, annual family conferences, monthly virtual meetings, educational materials, social media posts, newsletters, and email/phone assistance. Their outreach extends to over 1,300 affected adults. Additionally, they conduct patient-reported outcomes surveys and promote research to enhance the management and treatment of Fabry Disease. For Fabry Disease Awareness Month, they increase awareness by providing daily educational updates.
Official website here: www.fabrydisease.org
Is National Fabry Disease Foundation legitimate?
National Fabry Disease Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. National Fabry Disease Foundation 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: $116,240
Professional Fundraising Fees: $0
Other Salaries and Wages: $7,168
For more financial information, click here
Official website here: www.fabrydisease.org
What is the mission statement of National Fabry Disease Foundation?
The National Fabry Disease Foundation's mission is centered around identifying, diagnosing, and treating individuals with Fabry disease in a timely manner to prevent a diminished quality of life and life-threatening consequences. The organization also focuses on providing education and awareness about the disease to affected individuals, their families, physicians, and the public. Additionally, they offer support and assistance to those with Fabry disease and their families. Furthermore, the foundation promotes research to improve the management and treatment of Fabry disease.
Official website here: www.fabrydisease.org
Who is the CEO of National Fabry Disease Foundation?
Gerald Walter is the Chair of National Fabry Disease Foundation.
Official website here: www.fabrydisease.org
What is the revenue of National Fabry Disease Foundation?
National Fabry Disease Foundation's revenue in 2023 was $307,957.
Official website here: www.fabrydisease.org
Who are the executives of National Fabry Disease Foundation and what are their salaries?
The average compensation at National Fabry Disease Foundation during 2023 was $61,704. There are 2 employees and 47 volunteers at National Fabry Disease Foundation.
Here are 6 key members and their salaries:
- Compensation: $109,200
- Related: $0
- Other: $3,276
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
Official website here: www.fabrydisease.org
Where can I find the form 990 for National Fabry Disease Foundation?
National Fabry Disease Foundation's most recent form 990 was submitted in 2023 and can be accessed here.
Official website here: www.fabrydisease.org
Learn more at the official website: www.fabrydisease.org
Mission Statement of National Fabry Disease Foundation
The National Fabry Disease Foundation is committed to ensuring that individuals affected by Fabry Disease are identified, diagnosed, and provided with timely treatment to prevent a diminished quality of life and potentially life-threatening consequences. This mission is twofold. Firstly, the organization aims to raise awareness and provide education about Fabry Disease to affected individuals and their families, as well as to medical professionals and the general public. Secondly, the National Fabry Disease Foundation offers support and assistance to those living with the disease and their families. Additionally, the foundation is dedicated to promoting research to improve the management and treatment of Fabry Disease. This involves conducting and advocating for studies that can lead to better outcomes for individuals with the disease.
Shop smarter and support your favorite cause with the Give Freely browser extension. Save money with coupons and donate to charity with a single click. Download now!
Impact
October, 2024
The National Fabry Disease Foundation plays a critical role in improving the lives of individuals affected by Fabry disease. Its efforts focus on early identification, accurate diagnosis, and timely treatment, which are essential for preventing life-threatening consequences and enhancing quality of life.
One of the foundation's key initiatives is its education and awareness programs aimed at ensuring that both families and healthcare providers recognize the symptoms of Fabry disease early on. By conducting family education conferences, virtual meetings, and providing robust online resources, the foundation fosters an informed community that can advocate for appropriate management and treatment.
The foundation's outreach extends to public education, targeting undiagnosed individuals through social media, newsletters, and comprehensive educational materials. Their engagement on platforms like Facebook and Twitter, alongside an informative website, helps raise awareness of the disease’s symptoms, reaching potentially thousands who may be unaware of their condition.
In addition to education, the foundation emphasizes research and the collection of patient-reported outcomes which inform both patients and healthcare providers, driving insights that can lead to better treatment protocols. Their dedicated communication with over 1,300 adults with Fabry disease ensures that support and assistance are readily available.
As a result of these initiatives, the organization has the potential to address the critical gap in diagnosis, as published literature suggests that 10-20 times more individuals may have Fabry disease than those currently diagnosed. The foundation's proactive approach to awareness and education not only improves individual outcomes but contributes to a broader understanding of Fabry disease within the medical community, paving the way for advancements in treatment and care.
This information is meant to be a general summary of National Fabry Disease Foundation. 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 2023.
- Gross Receipts: $307,957
Assets and Liabilities:
- Total Assets: $521,056
- Total Liabilities: $0
- Net Assets: $521,056
Want to help this charity, for free? You can click here to learn more about Give Freely
Organization Details
Founding Year
2005
Phone
(919) 732-2799Principal Officer
Gerald Walter
Main Address
144 E KING ST 1419, HILLSBOROUGH, NC, 27278
Website
www.fabrydisease.orgNTEE Category
Code: G198 - Disease
If you are a representative of National Fabry Disease Foundation and wish to learn more about how Give Freely can help you raise funds, please click here: https://givefreely.com/nonprofits/. Our services are offered at no cost to your organization.