Cardio Facio Cutaneous International

aka CFC International   |   Austin, TX   |  www.cfcsyndrome.org

Mission

CFC International is committed to the advancement of treatment, research, and understanding of CFC Syndrome. Our mission is improve the quality of life for individuals with CFC Syndrome through family and caregiver support, research, and education. With more than 450 individuals diagnosed worldwide, CFC International dedicates each and every dollar to the support of family medical conferences, research initiatives, and advocacy for families.

Ruling year info

1999

Executive Director

Tuesdi Dyer CFRE

Main address

16716 Cory Cactus Drive

Austin, TX 78738 USA

Show more contact info

EIN

16-1569293

NTEE code info

Specifically Named Diseases (G80)

Pediatrics (G98)

Fund Raising and/or Fund Distribution (U12)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

CFC International is dedicated to advancing treatment and research for CFC Syndrome. An ultra-rare disorder, we work hard provide support for families and caregivers with individuals diagnosed with CFC Syndrome.

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?

Services

Our numerous services include: A Patient Registry;
Biennial Family Medical Conferences; Research;
Family Liaison Programs;
Clinical and Caregiver Education;
Online Support Groups.

Population(s) Served
Families
Children and youth

Where we work

Financials

Cardio Facio Cutaneous International
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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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Cardio Facio Cutaneous International

Board of directors
as of 06/08/2022
SOURCE: Self-reported by organization
Board chair

Jennifer Iacobelli

Jenny Iacobelli

Tuesdi Dyer

Jeff Kohler

Shelly Greenhaw

Libby Airhart

Cara Borian

Leslie Rogers

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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 12/9/2020

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

No data

 

No data

Sexual orientation

No data

Disability

No data