Dystrophic Epidermolysis Bullosa Research Association of America, Inc.
Dystrophic Epidermolysis Bullosa Research Association of America, Inc.
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About this organization
Mission
DebRA of America's primary objective is to find a cure for epidermolysis bullosa (EB), a rare connective tissue disorder with many symptomatic and genetic variations. All variations share the common manifestation of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems may be seriously affected in the more severe forms of EB. Debra of America also provides supportive programs and services to those with EB and their families. We also provide educational literature and produce conferences for the patient population and the professional community to increase awareness of this rare disorder. In fact, Debra of America is the only national not-for-profit that supports research while providing supportive and educational services to the EB and professional community.
About
Public and professional education - educate the public & health professionals about dystrophic epidermolysis bullosa 'EB'
Interesting data from their 2020 990 filing
The filing sets forth the mission of the non-profit as “Debra is dedicated to finding a cure for ebidermolysis bullosa " eb" which effects 1 out of every 50,000 live births in the united states today. eb is a genetically based disease characterized by chronic, painfull blistering. the skin and mucous membranes are so fragile that the slightest touch can cause severe blistering inside and outside the body. present at birth, eb effects men and women of all races and ethnic groups, and sometimes, when there is no family history. it occurs as the result of a spontaneous gentic mutation. today, there is no cure or treatment for eb, except daily wound care and bandaging.genetic research is making progress towards treatments and a cure.”.
When detailing its responsibilities, they were listed as: “Debra is dedicated to finding a cure for eb thru research eb effects 1 out of every 50,000 live births in the u.s.”.
- The state in which the non-profit is legally permitted to operate is NY.
- The address of the non-profit for 2020 according to the filing is 75 BROAD ST300, NEW YORK, NY, 10004.
- The number of employees reported by the non-profit on their form as of 2020 is 11.
- Does not operate a hospital.
- Does not operate a school.
- Does not collect art.
- Does not provide credit counseling.
- Does not have foreign activities.
- Is not a donor advised fund.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is $95,603.
- The CEO compensation structure within the organization is based on a review and approval from a neutral party.
- The organization has a written policy that describes how long it will retain documents.
- The organization has 13 independent voting members.
- The organization was formed in 1979.
- The organization has a written policy that addresses conflicts of interest.
- The organization is required to file Schedule B.
- The organization is required to file Schedule J.
- The organization is required to file Schedule O.
- The organization pays $945,728 in salary, compensation, and benefits to its employees.
- The organization pays $141,022 in fundraising expenses.
- The organization provides Form 990 to its governing body.
- The organization has minutes of its meetings.
- The organization has a written whistleblower policy.
- The organization has fundraising events.
- The organization's financial statements were reviewed by an accountant.
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