GORLIN SYNDROME ALLIANCE
Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Virtual Community Group Meetings
The Gorlin Syndrome Alliance conducts quarterly community group meetings for affected individuals and their care partners. These include parents, young women, women 30+, and people over 50. The meetings allow attendees to share experiences and feel they are not alone as they cope with the multitude of burdens of this rare genetic disorder that can affect every organ system.
In-Person Meetings
The Gorlin Syndrome Alliance conducts in-person meetings. These bring together affected individuals, families, and care partners. The agendas include talks by medical experts on disease manifestations, interactive sessions, and time for people to be together, learn from and support one and other.
Education
The website of the Gorlin Syndrome Alliance provides vetted content on this rare disease through its multiple medical articles and disease information.
Where we work
External reviews
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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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.
GORLIN SYNDROME ALLIANCE
Board of directorsas of 09/01/2023
Julie Breneiser
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