Fibrous Dysplasia Foundation, Inc.

Research. Advocate. Collaborate.

aka FD/MAS Alliance   |   Grandville, MI   |  www.fdmasalliance.org

Mission

The FD/MAS Alliance (Fibrous Dysplasia Foundation (FDF)) is a community-led nonprofit that fights back against fibrous dysplasia, McCune-Albright syndrome (FD/MAS). We serve people and their families affected by FD/MAS through programs of research, education, and advocacy.

Ruling year info

2005

Executive Director

Ms. Adrienne McBride

Main address

2885 Sanford Ave SW #40754

Grandville, MI 49418 USA

Show more contact info

EIN

02-0715210

NTEE code info

Alliance/Advocacy Organizations (E01)

Public, Society Benefit - Multipurpose and Other N.E.C. (W99)

IRS filing requirement

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

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Communication

Blog

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?

Global Rare Disease Registry of Patients with Fibrous Dysplasia/McCune Albright Syndrome

Associated with the National Institute of Health for research purposes, annual meetings for information distribution, and physician education.

Population(s) Served
Adults

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    SMS text surveys, Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups,

  • What significant change resulted from feedback?

    After

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners, We also maintain a de-identified Patient Registry,

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

Fibrous Dysplasia Foundation, Inc.
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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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lock

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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Fibrous Dysplasia Foundation, Inc.

Board of directors
as of 5/25/2022
SOURCE: Self-reported by organization
Board co-chair

Ms. Lauren Ruotolo


Board co-chair

Ms. Cindi Brandt Levin

Lauren Foster

Joyce Ellis

Sarah Healy

Lynn Lindaman, MD

Kiran Yarlagadda

Jocelyn Pederson

Leah Surprise

James Rae, CPA

Malissa Kenney

Gary Pollastro

Carrie Nawrocki

Anne Corvelle

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

Organizational demographics

SOURCE: Self-reported; last updated 5/25/2022,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability