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Bardet Biedl Syndrome Foundation

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

EIN: 463343666 ✦ West chester, PA ✦ Designated as a 501(c)(3)

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Overview

What is Bardet Biedl Syndrome Foundation?

The Bardet Biedl Syndrome Foundation is a nonprofit organization that prioritizes funding research for Bardet Biedl Syndrome. They achieve this goal by providing financial assistance to organizations like the Marshfield Clinic Research Institute, specifically supporting their CRIBBS registry. Furthermore, they invest in conferences and marketing expenses to spread awareness and foster collaboration within the research community. Their mission extends beyond financial support, as they also organize events to promote progress in understanding and treating Bardet Biedl Syndrome.


Official website here: www.bardetbiedl.org

What do the Facebook reviews say about Bardet Biedl Syndrome Foundation?

While the Bardet Biedl Syndrome Foundation currently has no formal ratings, the three reviews from Facebook offer valuable insights. One reviewer highlighted the organization as a fantastic resource for families seeking connection, emphasizing the importance of the community it fosters.

However, there seems to be a desire for more inclusivity, particularly with content available in Spanish. This suggests that while the foundation is appreciated for its supportive environment, there is room for improvement in terms of accessibility and resources for diverse audiences.

Overall, the positive sentiment towards the foundation indicates that it is making a meaningful impact, but enhancing language options could enhance its effectiveness and reach within the community.


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

Is Bardet Biedl Syndrome Foundation legitimate?

Bardet Biedl Syndrome Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. Bardet Biedl Syndrome 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: $0
Professional Fundraising Fees: $0
Other Salaries and Wages: $0

For more financial information, click here


Official website here: www.bardetbiedl.org

What is the mission statement of Bardet Biedl Syndrome Foundation?

The Bardet Biedl Syndrome Foundation is dedicated to advancing research related to Bardet Biedl Syndrome. They accomplish this by funding various programs, such as granting funds to institutions like the Marshfield Clinic Research Institute for their CRIBBS registry. Additionally, the foundation organizes conferences and manages marketing expenses to further their cause. Their primary objective is to contribute to the understanding and potential treatments for Bardet Biedl Syndrome.


Official website here: www.bardetbiedl.org

Who is the CEO of Bardet Biedl Syndrome Foundation?

Timothy Ogden is the President of Bardet Biedl Syndrome Foundation.


Official website here: www.bardetbiedl.org

What is the revenue of Bardet Biedl Syndrome Foundation?

Bardet Biedl Syndrome Foundation's revenue in 2023 was $372,565.


Official website here: www.bardetbiedl.org

Who are the executives of Bardet Biedl Syndrome Foundation and what are their salaries?

There 5 volunteers at Bardet Biedl Syndrome Foundation.


Here are 3 key members and their salaries:


Timothy Ogden (President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Alex Ogeka (Vice-President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Nathan Arnesen (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0


Official website here: www.bardetbiedl.org

Where can I find the form 990 for Bardet Biedl Syndrome Foundation?

Bardet Biedl Syndrome Foundation's most recent form 990 was submitted in 2023 and can be accessed here.


Official website here: www.bardetbiedl.org

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

Mission Statement of Bardet Biedl Syndrome Foundation

The Bardet Biedl Syndrome Foundation is committed to advancing research in the field of Bardet Biedl Syndrome. To accomplish this, the organization funds various programs, including providing grants to the Marshfield Clinic Research Institute to support their CRIBBS registry. This registry is a crucial tool in collecting and analyzing data related to Bardet Biedl Syndrome, which can lead to valuable insights and potential breakthroughs in treatment. In addition to funding research, the foundation also organizes conferences and manages marketing expenses, contributing to the dissemination of knowledge and awareness about Bardet Biedl Syndrome. By supporting these initiatives, the Bardet Biedl Syndrome Foundation plays a significant role in driving progress in the understanding and management of this complex genetic disorder.

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Impact




October, 2024

The Bardet Biedl Syndrome Foundation significantly impacts the landscape of research and support for individuals affected by Bardet Biedl Syndrome (BBS). By funding key research initiatives, such as grants to the Marshfield Clinic Research Institute for the CRIBBS registry, the foundation plays a vital role in advancing understanding and treatment options for this complex genetic disorder.

Additionally, the organization’s efforts in organizing conferences enhance collaboration among researchers, clinicians, and families, fostering a community that shares knowledge and experiences. This creates a supportive network that is crucial for those affected by BBS, as it raises awareness and helps in building resources at both local and national levels.

Through its targeted approach in research funding and community engagement, the Bardet Biedl Syndrome Foundation not only contributes to the scientific understanding of BBS but also empowers families dealing with the challenges associated with the syndrome, ultimately improving the quality of life for those impacted by this rare condition.




This information is meant to be a general summary of Bardet Biedl Syndrome 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.

Revenue
$372,565 (2023)
Expenses
$172,225 (2023)
Efficiency

Other financial information:

This information is from the most recently submitted tax form from this organization, which was in 2023.

  • Investment Income: $16
  • Gross Receipts: $372,565

Assets and Liabilities:

  • Total Assets: $415,865
  • Total Liabilities: $0
  • Net Assets: $415,865

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Organization Details

Founding Year

2014

Principal Officer

Timothy Ogden

Main Address

403 Oermead Lane, West Chester, PA, 19380

NTEE Category

Code: E60 - Health

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