SILVER2023

GORLIN SYNDROME ALLIANCE

aka GORLIN SYNDROME ALLIANCE/GSA   |   Reading, PA   |  www.gorlinsyndrome.org

Mission

The mission of the Gorlin Syndrome Alliance is to thoughtfully support, comprehensively educate, and aggressively seek the best treatments and a cure for those affected by Gorlin syndrome.

Ruling year info

2000

Executive Director

Jean Pickford

Main address

PO Box 4

Reading, PA 19607 USA

Show more contact info

EIN

34-1915691

NTEE code info

Cancer (G30)

Cancer Research (H30)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

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.

Population(s) Served

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.

Population(s) Served

The website of the Gorlin Syndrome Alliance provides vetted content on this rare disease through its multiple medical articles and disease information.

Population(s) Served
Adults
Caregivers
Families
Non-adult children
Adults
Caregivers
Families
Non-adult children
People with diseases and illnesses
Adults
Caregivers
Families
Non-adult children
People with diseases and illnesses
Adults
Caregivers
Families
Non-adult children
Adults
Caregivers
Families
Non-adult children
People with diseases and illnesses
Adults
Caregivers
Families
Non-adult children
People with diseases and illnesses

Where we work

Financials

GORLIN SYNDROME ALLIANCE
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Operations

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

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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GORLIN SYNDROME ALLIANCE

Board of directors
as of 09/01/2023
SOURCE: Self-reported by organization
Board chair

Julie Breneiser

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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