PLATINUM2023

International Foundation for Gastrointestinal Disorders

Because Digestive Health Matters

aka IFFGD   |   Mount Pleasant, SC   |  https://www.iffgd.org

Mission

Our mission is to inform, assist, and support people affected by gastrointestinal or digestive disorders.

Notes from the nonprofit

International Foundation for Gastrointestinal Disorders works to give a voice and hope to patients impacted by chronic gastrointestinal disorders. Our President, Ceciel T. Rooker, is currently serving on a National Institute of Diabetes and Kidney Diseases (NIDDK) working group to provide input on an institute-wide strategic plan, serves on the National Digestive, Diabetes, and Kidney Diseases Advisory Council as a fully appointed member, and is the chairperson for the Digestive Disease National Coalition. All of these appointments help patient's voices have an impact.

Ruling year info

1995

President and Executive Director

Ms. Ceciel Rooker

Main address

537 Long Point Road Suite 101

Mount Pleasant, SC 29464 USA

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Formerly known as

International Foundation for Functional Gastrointestinal Disorders

EIN

39-1710898

NTEE code info

Diseases of Specific Organs (G40)

Medical Specialty Research (H90)

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

Millions of people's daily lives are impacted by digestive disorders. Many go undiagnosed, misdiagnosed, or have a diagnosis but limited treatment options. Our goal is to raise awareness of the disorders so patients are better educated about the options available, as well as, working to raise awareness and get additional funding for research that will help find treatments and cures for the disorders.

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?

Research Grants and Awards

Seek applications from investigators with a preference given to clinical research that is patient oriented, as well as basic research that is translational in nature.

Population(s) Served
People with diseases and illnesses

IFFGD works with patients and government to designate digestive health awareness events on the national Health Observance Calendar. We were already successful in implementing April as IBS Awareness month, August as Gastroparesis Awareness month, and the week of Thanksgiving as GERD Awareness week. We are currently reviewing options to add additional digestive disorders.

Population(s) Served
People with diseases and illnesses

IFFGD supports and coordinates IFFGD Hill Days, as well as, continuously communicates with government representatives to gain support of digestive health funding.
IFFGD Hill Days allow patients to share their stories with government. Together we connect with US House Representative to educate him or her about functional gastrointestinal and motility disorders and ask them to take action on issues critical to this community, such as cosponsoring The Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 1187).

Population(s) Served
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of organizational partners

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people, Adults, Children and youth

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Value is number of industry council partner organizations.

Number of policymakers or candidates reached

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Related Program

Digestive Health Advocacy

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Number of cosponsors for H.R. 1187. H.R. 1187 expires in 2018; therefore, we will work to get a bill reintroduced in 2019 and add cosponsors. Bill reintroduced as H.R. 3396 in 2019.

Total number of grants awarded

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Related Program

Research Grants and Awards

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Research Grants awarded

Average online donation

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people, Adults, Children and youth

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Based on total donations received via IFFGD website donations.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our goals include raising awareness among the public and professionals about chronic digestive disorders in adults and children, supporting research, and facilitating meaningful action to improve life for all who are affected.

We provide online tools and print publications aimed at educating the public and improving outcomes for patients and families. We participate in professional conferences to raise awareness. We maintain a presence with government agencies that support research or regulate treatments to ensure that the needs of our patient community are addressed. We raise money to directly fund research aimed at improving care and treatment.

We maintain a family of 10 websites aimed at education and patient empowerment, have an active social media presence, and a presence with legislative and regulatory offices.

Since we began in 1991, we have seen a growing awareness about and support for patients with functional GI and motility disorders among the public and health care providers. Research is beginning to better understand these complex conditions, which lack obvious structural markers, yet can range in severity from mild to debilitating to life-threatening. The few effective treatments that are now available and do not work for everyone. Efforts must continue to build on what has been learned to understand the conditions, to find more effective treatments, and to be able to target treatments more directly to patient subgroups.

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 using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve

  • What significant change resulted from feedback?

    We are offering hybrid patient education events that include pre-recorded sessions and live sessions via a virtual platform. Prior to COVID-19, we were also providing in-person patient education events that added social events of lunch and receptions to allow patients to get to know each other and find others in their group. All of these different forms of education delivery are a result of feedback from surveys, interviews, and community hall-type meetings with patients. We also have a Patient Advisory Committee that works closely with our President on programs planning.

  • 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 get honest feedback from the people we serve

Financials

International Foundation for Gastrointestinal Disorders
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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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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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International Foundation for Gastrointestinal Disorders

Board of directors
as of 01/25/2023
SOURCE: Self-reported by organization
Board chair

Ms. Ceciel Rooker

Dianne Bach

Brittany Aliano

William Chey, M.D.

Michigan Medicine

Erin Slater, RD LDN

Michael Stolar, PhD

Darren Brenner, M.D.

Northwestern Medicine

Michele McCorkle

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 ? Not applicable
  • 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? No

Organizational demographics

SOURCE: Self-reported; last updated 1/25/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
Asian/Asian American
Gender identity
Female, Not transgender (cisgender)
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability