Disease, Disorders, Medical Disciplines

DUPUYTREN RESEARCH GROUP

A Future Without Dupuytren Disease.

aka DUPUYREN FOUNDATION

West Palm Beach, FL

Mission

VISION STATEMENT
A future without Dupuytren disease.
MISSION STATEMENT
New research for an old problem; leading the way to end Dupuytren disease in our lifetime.
CORE VALUES
Our core question is “What is the best we can do for families affected by Dupuytren disease?".
Our core belief is that patients and families affected by Dupuytren related conditions hold the key to finding a cure.
Our core mandate is to pioneer research to cure Dupuytren disease and related conditions.
Our core team is patients, scientists, and physicians working together on innovative research to find the cause and the cure of this disease.

Ruling Year

2009

Executive Director

Dr. Charles Eaton

Main Address

1850 Forest Hill Blvd Suite #201

West Palm Beach, FL 33406 USA

Keywords

Medical Research

EIN

26-3886958

 Number

4083815446

Cause Area (NTEE Code)

Specifically Named Diseases (G80)

Research Institutes and/or Public Policy Analysis (E05)

Birth Defects, Genetic Diseases Research (H20)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Social Media

Blog

Programs + Results

What we aim to solve New!

What is Dupuytren disease? Dupuytren disease is the most common crippling hand condition that people have never heard of. It affects at least ten million Americans, making their fingers permanently bent, sometimes severely. Why isn't it more commonly known? Dupuytren contracture makes the fingers bent as if relaxed, not obvious unless the person tries to open their hand. It progresses slowly, usually doesn't hurt, and mostly affects seniors. It's often mistaken for arthritis or tendinitis.
Why is it important? Bent fingers are only part of the picture. Dupuytren disease is a systemic problem. It can affect the hands (Dupuytren contracture, Garrod knuckle pads) and the feet (Ledderhose Disease). Developing one of these increases risk of developing others. It is a serious health issue. People with Dupuytren contracture have a greater risk for cardiovascular disease, several types of cancer, and early death – for reasons unknown. There is no prevention and no cure.

Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

A Future Without Dupuytren Disease

Where we workNew!

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of participants who will benefit from specific disease related blood testing

TOTALS BY YEAR
Population(s) served

General/Unspecified

Related program

A Future Without Dupuytren Disease

Context notes

Blood testing is scheduled to begin in 2019

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

The Dupuytren Foundation is seeking funding for research to find a cure for Dupuytren disease, a common crippling hand condition. We are the largest global advocate for this neglected condition. Our research will provide innovative solutions to problems which have blocked progress in Dupuytren research for generations. We have assembled the right team, the right technologies, directly engaged the Dupuytren patient community for collaboration.

The first stage of online surveys launched and currently has over 3500 enrollees. The second stage will be blood collections. For cost-efficiency, the study will be will be rolled out in steps. It will begin with a small pilot study of all three stages. Larger versions will follow, guided and refined by cumulative experience. Primary use of donor funds includes laboratory costs, blood collection and storage fees, and costs associated with other nonprofit partner organizations.

Dr. Charles Eaton is the Executive Director & BOD President of the Dupuytren Foundation which he founded in 2008. Dr. Eaton is a board certified hand surgeon & world renowned expert on Dupuytren Disease. (DD) His extensive experience includes introducing a minimally invasive procedure to the United States in 2003 which is now considered to be the preferred treatment for advanced DD. Dr. Eaton serves on advisory boards of the International, British, & Canadian Dupuytren societies.  In 2012 Dr. Eaton closed his clinical practice & is now devoted to the mission of the Dupuytren Foundation-to find a cure for DD as rapidly & efficiently as possible.

The Dupuytren Foundation Research Committee members are highly experienced scientists from five countries. Members include scientists and physicians from University of California Los Angeles, Yale University, the Mayo Clinic, Oxford University and other academic institutions (http://dupuytrens.org/research-committee/). With our team in place, we hope to find a cure as soon as possible for DD.
The larger potential benefit of the study is understanding the biology and developing better treatment options for pulmonary fibrosis, cirrhosis of the liver, scleroderma and other diseases with parallel biology.

The first stage of online surveys launched and currently has over 3500 enrollees. As funding becomes available, we can begin the second stage, collecting blood from enrollees, as we work toward a cure.

External Reviews

Photos

Financials

DUPUYTREN RESEARCH GROUP

Fiscal year: Jan 01 - Dec 31

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Operations

The people, governance practices, and partners that make the organization tick.

Need more info?

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  • Address, phone, website and contact information
  • Forms 990 for 2017, 2017 and 2016
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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?

Yes

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Not Applicable

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Yes

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Yes

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

Not Applicable