Overview
What is Dystrophic Epidermolysis Bullosa Research Association Of America?
The Dystrophic Epidermolysis Bullosa Research Association of America is a nonprofit organization headquartered in New York City, specifically at 75 Broad Street Suite 300. Their main mission is to raise awareness and educate both the public and healthcare professionals about Dystrophic Epidermolysis Bullosa (EB), a genetic condition characterized by chronic, painful blistering. The skin's fragility, often present at birth, can lead to blistering both internally and externally, affecting individuals of various races and ethnic groups. With no current cure or treatment, besides daily wound care and bandaging, the organization is dedicated to funding research aimed at discovering potential treatments and a cure. As of now, the organization has a workforce of 9 individuals committed to their cause.
Official website here: www.debra.org
What are the reviews and ratings of this charity?
Charity Navigator Rating: 91% (Four-Star out of Four Star rating)
The Dystrophic Epidermolysis Bullosa Research Association of America has achieved a high rating of 91% on Charity Navigator, reflecting strong performance in accountability and finance. With an impressive score of 92 for Accountability & Finance and 87 for Culture & Community, this organization demonstrates a commitment to transparency and responsible financial management. Notably, the majority of its board members are independent, which enhances its governance quality.
The organization has maintained a solid program expense ratio of 85.90%, indicating that a significant majority of its funds are directed towards its charitable programs. Furthermore, it has received top scores in feedback collection and utilization, showing that it actively seeks and implements stakeholder input. Its adherence to important policies, including conflict of interest and whistleblower policies, further underscores its dedication to ethical standards.
However, the organization has room for improvement in its equity strategies and data practices, as evidenced by scores of 81 out of 100 for equity strategies and lower scores in its equity data and policies. Overall, while the Dystrophic Epidermolysis Bullosa Research Association of America showcases strong operational effectiveness, addressing its equity frameworks could enhance its overall impact.
This AI summary has been generated from information found on Charity Navigator.
What do the Facebook reviews say about Dystrophic Epidermolysis Bullosa Research Association Of America?
98% of 216 reviewers on Facebook recommend the Dystrophic Epidermolysis Bullosa Research Association Of America. Here’s what they are saying:
The organization is highly regarded for providing essential support and resources to families affected by dystrophic epidermolysis bullosa. Many have expressed gratitude for the group's empathetic approach during challenging times, particularly highlighting how helpful and informative they were when navigating the complexities of the condition.
Overall, participants appreciate the community and guidance that the association offers, emphasizing its role in making a significant difference in their lives during crucial moments. This sense of support fosters a positive perception of the nonprofit among its users.
This AI summary has been generated from reviews found on Facebook.
Is Dystrophic Epidermolysis Bullosa Research Association Of America legitimate?
Dystrophic Epidermolysis Bullosa Research Association Of America is a legitimate nonprofit organization registered as a 501(c)(3) entity. Dystrophic Epidermolysis Bullosa Research Association Of America 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: $304,910
Professional Fundraising Fees: $0
Other Salaries and Wages: $636,289
For more financial information, click here
Official website here: www.debra.org
What is the mission statement of Dystrophic Epidermolysis Bullosa Research Association Of America?
The Dystrophic Epidermolysis Bullosa Research Association of America is committed to finding a cure for Dystrophic Epidermolysis Bullosa (EB), a genetic disorder that affects 1 out of every 50,000 live births in the United States. This disease is characterized by chronically painful blistering of the skin and mucous membranes, making them exceptionally fragile to even the slightest touch. Affecting individuals of all races and ethnic groups, EB can occur due to spontaneous genetic mutations with no family history. Currently, there is no known cure or treatment for EB beyond daily wound care and bandaging. The organization is making strides in genetic research towards potential treatments and a future cure.
Official website here: www.debra.org
What is the revenue of Dystrophic Epidermolysis Bullosa Research Association Of America?
Dystrophic Epidermolysis Bullosa Research Association Of America's revenue in 2024 was $3,150,804.
Official website here: www.debra.org
Who are the executives of Dystrophic Epidermolysis Bullosa Research Association Of America and what are their salaries?
The average compensation at Dystrophic Epidermolysis Bullosa Research Association Of America during 2024 was $117,650. There are 8 employees and 11 volunteers at Dystrophic Epidermolysis Bullosa Research Association Of America.
Here are 12 key members and their salaries:
- Compensation: $304,910
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- Other: $9,450
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Official website here: www.debra.org
Where can I find the form 990 for Dystrophic Epidermolysis Bullosa Research Association Of America?
Dystrophic Epidermolysis Bullosa Research Association Of America's most recent form 990 was submitted in 2024 and can be accessed here.
Official website here: www.debra.org
Learn more at the official website: www.debra.org
Mission Statement of Dystrophic Epidermolysis Bullosa Research Association Of America
Dystrophic Epidermolysis Bullosa Research Association of America (DERA) is committed to finding a cure for Dystrophic Epidermolysis Bullosa (EB), a genetic disease affecting one in every 50,000 live births in the United States. Characterized by chronic, painful blistering, EB affects both men and women of various races and ethnicities, sometimes without a family history. Although there is no current cure or treatment for EB, except for daily wound care and bandaging, genetic research is making significant progress towards treatments and a potential cure. DERA, therefore, is dedicated to supporting this research to alleviate the suffering of those affected by EB.
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Impact
July, 2024
The Dystrophic Epidermolysis Bullosa Research Association Of America is dedicated to finding a cure for Epidermolysis Bullosa (EB), a rare genetic disease that affects 1 out of every 50,000 live births in the United States. EB is characterized by chronic, painful blistering of the skin and mucous membranes, making the slightest touch a cause for severe blistering both inside and outside the body. Despite the lack of a cure or specific treatment, DEBRA is actively involved in genetic research to progress towards finding treatments and a cure for EB. Their impact includes public and professional education efforts to raise awareness about EB and support research initiatives aimed at alleviating the suffering of individuals affected by this disease.
This information is meant to be a general summary of Dystrophic Epidermolysis Bullosa Research Association Of America. 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: $722
- Gross Receipts: $3,429,363
Assets and Liabilities:
- Total Assets: $2,090,353
- Total Liabilities: $293,969
- Net Assets: $1,796,384
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Organization Details
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