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National Foundation For Ectodermal Dysplasias

Learn about this cause: What are the reviews? Is it Legit? Do I like the mission? What is the CEO's salary?

EIN: 371112496 ✦ Fairview heights, IL ✦ Designated as a 501(c)(3)

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Overview

What is National Foundation For Ectodermal Dysplasias?

The National Foundation for Ectodermal Dysplasias (NFED) is a nonprofit organization located in Fairview Heights, Illinois. Its primary mission is to empower and connect individuals and families affected by Ectodermal Dysplasias, a group of rare genetic disorders. The organization achieves this through various support programs and the dissemination of high-quality information. This information is shared via the First Connect program, a website, medical/dental guide series, and conferences. The National Family Conference, a significant event, brings together entire families to learn, share experiences, and network with experts in the field. Affected children also participate in educational and social activities at these conferences, boosting their self-esteem. Financial assistance is provided to help individuals attend these conferences. The Family to Family Network, another initiative, connects families with local liaisons who offer moral support, information, guidance, and resources. NFED's workforce consists of 8 individuals committed to enhancing the lives of those affected by Ectodermal Dysplasias.


Official website here: www.nfed.org

What are the reviews and ratings of this charity?

Charity Navigator Rating: 100% (Four-Star out of Four Star rating)

The National Foundation For Ectodermal Dysplasias has achieved an impressive 100% score, reflecting its strong commitment to accountability and finance. The organization is led by a majority independent board, which enhances transparency and governance. It demonstrates robust financial management practices, including a very low liabilities to assets ratio of 3.45% and a high program expense ratio of 84.70%, indicating that a significant portion of its resources directly supports its mission.

User feedback highlights the positive impact the organization has on individuals. One review from a client served highlights the excellent support provided, indicating that the foundation effectively meets the needs of those it aims to assist. This suggests that the organization is not only financially sound but also meets the expectations of its stakeholders.

While the charity's financial practices and leadership have received high marks, there are no additional reviews or feedback that provide further insights into areas for improvement. Overall, the National Foundation For Ectodermal Dysplasias stands out as a well-managed nonprofit dedicated to its cause.


This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.

What do the Facebook reviews say about National Foundation For Ectodermal Dysplasias?

94% of reviewers on Facebook recommend the National Foundation for Ectodermal Dysplasias. Here is a summary of their reviews:

Many individuals express appreciation for the support and resources provided by the nonprofit. Reviewers highlight the importance of the organization in facilitating connections between families affected by ectodermal dysplasias and medical professionals who can offer assistance. The community created by the foundation is noted as a valuable resource for sharing experiences and accessing vital information.

There are mentions of the challenges faced by families in finding appropriate medical care for children with ectodermal dysplasias, emphasizing the need for awareness and education among healthcare providers. The foundation seems to resonate strongly with users who are seeking guidance and support during difficult times, reflecting a sentiment of gratitude towards the services offered. Overall, the organization appears to be making a positive impact on the lives of those it serves.


This AI summary has been generated from reviews found on Facebook.

Is National Foundation For Ectodermal Dysplasias legitimate?

National Foundation For Ectodermal Dysplasias is a legitimate nonprofit organization registered as a 501(c)(3) entity. National Foundation For Ectodermal Dysplasias 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: $583,754

For more financial information, click here


Official website here: www.nfed.org

What is the mission statement of National Foundation For Ectodermal Dysplasias?

The National Foundation for Ectodermal Dysplasias is committed to empowering and connecting individuals and families affected by ectodermal dysplasias through education, support, and research. Their mission is to provide high-quality information to enhance the quality of life of affected individuals and their families. This information is disseminated through various platforms such as the First Connect program, a website, medical/dental guide series, and conferences. The National Family Conference, their flagship program, brings entire families together to learn, share experiences, and network with experts. Affected children also participate in educational and social activities at the conferences, helping to build self-esteem. The foundation also offers financial assistance to individuals to attend these conferences and maintains a family-to-family network, connecting families with local liaisons who provide moral support, information, and practical advice.


Official website here: www.nfed.org

Who is the CEO of National Foundation For Ectodermal Dysplasias?

Karl Nelsen is the President of National Foundation For Ectodermal Dysplasias.


Official website here: www.nfed.org

What is the revenue of National Foundation For Ectodermal Dysplasias?

National Foundation For Ectodermal Dysplasias's revenue in 2022 was $1,493,211.


Official website here: www.nfed.org

Who are the executives of National Foundation For Ectodermal Dysplasias and what are their salaries?

The average compensation at National Foundation For Ectodermal Dysplasias during 2022 was $72,969. There are 8 employees and 375 volunteers at National Foundation For Ectodermal Dysplasias.


Here are 13 key members and their salaries:


Karl Nelsen (President)
  • Compensation: $0
  • Related: $0
  • Other: $0
George Barbar (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Keith Throm (Secretary)
  • Compensation: $0
  • Related: $0
  • Other: $0
Richard Stratz (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Krista Basile (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Roy Moffitt (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Marianne Vermeer (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0
J Timothy Wright Dds Ms (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Anil Vora (Vice President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Ruth Geismar (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Jack Kriz (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Timothy Mickelson (Director Of Development)
  • Compensation: $113,461
  • Related: $0
  • Other: $0
Mary Fete (Executive Director)
  • Compensation: $118,124
  • Related: $0
  • Other: $0


Official website here: www.nfed.org

Where can I find the form 990 for National Foundation For Ectodermal Dysplasias?

National Foundation For Ectodermal Dysplasias's most recent form 990 was submitted in 2022 and can be accessed here.


Official website here: www.nfed.org

Learn more at the official website: www.nfed.org

Mission Statement of National Foundation For Ectodermal Dysplasias

The National Foundation for Ectodermal Dysplasias, a nonprofit organization, is committed to empowering and connecting individuals and families affected by ectodermal dysplasias. Through education, support, and research, the foundation aims to improve the quality of life for those touched by this condition.

In terms of support, the National Foundation for Ectodermal Dysplasias has a team of family members and affected individuals who oversee its programs. They publish high-quality information, which is shared through various platforms such as the First Connect program, a website, medical/dental guide series, and conferences. The organization's flagship event is the National Family Conference, which brings entire families together to learn, share, and network with one another and with expert care providers. Affected children and their siblings also attend Kids Camp at the conferences, where they engage in educational and social activities with other children like them, helping to boost their self-esteem. The foundation provides financial assistance to individuals to attend the Family Conference.

Furthermore, the National Foundation for Ectodermal Dysplasias operates a Family to Family Network, connecting families with a caring liaison in their region. This liaison offers moral support, information, practical advice, guidance, and resources to the families. This network is a crucial part of the organization's mission to empower and connect individuals and families affected by ectodermal dysplasias, providing them with the support they need to navigate their lives with this condition.

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Impact




October, 2024

The National Foundation for Ectodermal Dysplasias plays a crucial role in empowering and connecting individuals and families affected by ectodermal dysplasias. Through comprehensive support programs, it provides critical information that enhances the quality of life for affected individuals. The organization produces high-quality educational materials available through various channels, including its First Connect program and medical/dental guide series.

Central to its initiatives is the National Family Conference, which fosters networking and sharing among families and expert care providers. This event not only offers educational opportunities for families but also includes a dedicated kids camp, where affected children and their siblings engage in activities that bolster self-esteem and facilitate social connections with peers facing similar challenges.

Furthermore, the Family Support Teams made up of family members and affected individuals offer tailored assistance, helping families navigate their unique challenges with practical advice, support, and resources through the Family to Family Network. Financial assistance is also provided to ensure broader access to these invaluable conferences and programs, creating a community where individuals and families feel supported and empowered. Overall, the foundation significantly impacts the lives of those affected by ectodermal dysplasias by fostering education, providing essential resources, and building a sense of community.




This information is meant to be a general summary of National Foundation For Ectodermal Dysplasias. 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.

Revenue
$1,493,211 (2022)
Expenses
$1,083,870 (2022)
Efficiency

Other financial information:

This information is from the most recently submitted tax form from this organization, which was in 2022.

  • Investment Income: $254,390
  • Program Service Revenue: $24,687
  • Gross Receipts: $1,514,984

Assets and Liabilities:

  • Total Assets: $3,999,579
  • Total Liabilities: $190,948
  • Net Assets: $3,808,631

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Programs

Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.

NATIONAL FAMILY CONFER

Revenue

$24,687

Organization Details

Founding Year

1981

Principal Officer

Karl Nelsen

Main Address

6 EXECUTIVE DRIVE SUITE 2, FAIRVIEW HEIGHTS, IL, 62208

NTEE Category

Code: G46Z - Disease

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