Wilson Disease Association
Programs and results
What we aim to solve
Our largest and most critical project is Patient Registry Research for which we partnered with Yale University Medical School. It is the first research of its kind for this disease and will provide a platform for future research. Wilson Disease is virtually unknown yet it affects 1 in every 18,000. There is a study that states about 60% of Wilson Disease patients are misdiagnosed. It is terminal without treatment and patients can live a relatively normal life with existing drugs that cost approximately $26,000.00 a month. We want this research to lead the way to ultimately help with the accurate diagnosis of the disease and alternative treatments.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
WDCN Patient REgistry
First research of its kind for Wilson disease to help better diagnosis, better treatments and advance the enxt step of research
Where we work
External reviews
Photos
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Support patients by directing them to medical facilities knowledgable about Wilson Disease. Work with pharmaceutical companies to ensure all patients have access to medicine. Fund research. Educate patients, physicians, and researchers.
What are the organization's key strategies for making this happen?
1. Our annual conference is an information hub for patients and doctors as well as industry.
2. Our publications and other communications including social media and website freshness to grow awareness and inform the public
3. Fundraise to complete the Patient Registry
4. Organize our volunteers to help support newly diagnosed patients
5. Answer the phones to respond to requests for help or information
What are the organization's capabilities for doing this?
We are small and have been reorganizing our operations such as accounting to do better reporting for transparency.
We have been able to manage the requests for information and help and don't foresee issues with that respect.
We have been able to grow our conferences.
We have used social media and publications but we would like to expand our reach beyond our current audience. Fundraising for a disease that most people are not aware of is different than fundraising for diseases the public knows about. Most of our historical funds have been donated by friends or family of patients and to really reach our goal we will need outside sources before we exhaust that audience.
What have they accomplished so far and what's next?
We raised enough to fund half of our Patient Registry project. This Medical research will point the way to the next topic of research.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To make fundamental changes to our programs and/or operations, To strengthen relationships with the people we serve
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Which of the following feedback practices does your organization routinely carry out?
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What challenges does the organization face when collecting feedback?
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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- Compare nonprofit financials to similar organizations
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Wilson Disease Association
Board of directorsas of 07/12/2022
Jean Perog
No Affiliation
Term: 2016 -
Drew Katz
of Interstate Outdoor Advertising
Mary Graper
Stephan Walsh
Rachel Albert
Jean Perog
Carol Terry
Rhonda Rowland
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and 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? No -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? No -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No