CDH International

A global initiative to stop Congenital Diaphragmatic Hernia.

aka CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support   |   Wake Forest, NC   |  http://www.cdhi.org

Mission

CDH International was created to help families of babies born with Congenital Diaphragmatic Hernia by providing support services, promoting research, and raising awareness. CDH International is the world's oldest and largest Congenital Diaphragmatic Hernia nonprofit organization. We believe firmly at CDH International that the children come before any charity initiatives or successes. Therefore, we are dedicated to the inclusion of all Congenital Diaphragmatic Hernia patients from every country and to collaborative, productive relationships with all stakeholders to serve these children better and give them a greater chance of survival.

Notes from the nonprofit

Working in 84 countries, CDH International also has NGO status in the United Kingdom, Singapore, Hong Kong, Switzerland, Canada and the Netherlands.

Ruling year info

1995

Principal Officer

Dawn M. Torrence Ireland

Main address

3650 Rogers Rd #290

Wake Forest, NC 27587 USA

Show more contact info

Formerly known as

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

EIN

56-1916661

NTEE code info

Pediatrics Research (H98)

Birth Defects, Genetic Diseases Research (H20)

Alliance/Advocacy Organizations (G01)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2020, 2019 and 2018.
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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

CDH International is a global initiative to stop Congenital Diaphragmatic Hernia through supporting research, participating in research projects, supporting patients and families and raising awareness on a worldwide platform.

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?

CDH Research

CDHi maintains the CDH Patient Registry, the history database of patients with Congenital Diaphragmatic Hernia with over 6500 patients in 74 countries.

Working with WOFAPS, CARES for Kids / DHREAMS, the CDH Study Group, the University of Utah, Boston Children's Hospital, and Baylor, we have a more comprehensive look at Congenital Diaphragmatic Hernia. We strive to find the cause, prevention, and best treatments of CDH as quickly as we can.

Our research has been published in numerous medical journals, including The Lancet, and presented at over 50 medical conferences since 2017.

We work with the world's best CDH and rare disease researchers; we serve on committees with NICHD, GICS, the KidsFirst Database, RDI, the G4 Alliance, and the UN.

CDH is a founding member of SARA, ACDHO, RAM and WRAP, patient group alliances for research.

In the next 3 years, our goal is to finish our work with the WHO to create a Global Standard of Care for CDH, as well as similar congenital anomalies.

Population(s) Served
Infants and toddlers
People with diseases and illnesses
People with disabilities
Pregnant people

CDH International leads the Congenital Diaphragmatic Hernia community in raising global awareness through the annual CDH Awareness Day events on April 19th, the CDH Telethon, light ups around the world, both federal and state proclamations, parades, fundraisers and more.

We also run the CDH Charity Shop, raising awareness of Congenital Diaphragmatic Hernia through clothing, accessories and other items to help raise funds as well.

We have written 7 books, created 100's of videos and given dozens of media interviews. We also run the CDH Radio Show. 

We have used billboards, murals and other projects to raise awareness.

In 2021, we registered the official Scottish Tartans for Congenital Diaphragmatic Hernia Awareness.

Population(s) Served
People with diseases and illnesses
Children and youth
Pregnant people
Family relationships
People with disabilities

CDH International was originally created to help families affected by Congenital Diaphragmatic Hernia by providing accurate, unbiased information about the diagnosis and medical care available and by providing positive, honest and compassionate support to all CDH families.

We also offer free care-packages, known as "CDH HOPE Totebags" which include information on Congenital Diaphragmatic Hernia, as well as care items such as a teddy bear, shirts, baby blanket, handprint kids and more. CDH International coordinates with other Congenital Diaphragmatic Hernia charities to include giftcards and items from them as well so that we are working together to support families and not wasting resources by duplicating projects and postage costs.

When funding is available, we offer Financial Grants, Funeral Assistance Funds and Scholarships to CDH families as well.

Population(s) Served
People with diseases and illnesses
Pregnant people
People with physical disabilities
Children and youth
Family relationships

Where we work

Awards

Presidential Point of Light Award 2014

Point of Light

Affiliations & memberships

Alliance of Congenital Diaphragmatic Hernia Organizations 2011

National Organization of Rare Disorders 2021

Global Initiative for Children's Surgery 2017

ELSO 2018

Rare Diseases International 2021

NIH Kids First Database Liaison 2018

Friends of NICHD 2018

Canadian Organization of Rare Disorders 2021

EURORDIS 2020

Global Genes 2020

WOFAPS 2020

G4 Alliance 2021

Surgical Anomalies Research Alliance 2021

Worldwide Rare Advocacy Partnership 2021

G4 Alliance 2021

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 patients registered in the patient registry

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

People with diseases and illnesses

Related Program

CDH Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The CDH Registry is a comprehensive study of the medical history, family medical history, prenatal exposures, medical procedures, medical complications and long term medical status & care of patients.

Number of chronically ill patients served

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

People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We support accurate medical information, care packages, educational materials, conferences, events and support to the patients and families affected by CDH.

Total number of grants awarded

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

Chronically ill people, People with physical disabilities, Pregnant people, People with other disabilities

Related Program

CDH Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The pandemic hindered our ability to give research grants for 2020. Also counted in the number are internal grants to attend and report research at congresses for CDH, pediatrics and rare disease.

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 at CDH International are to:

1. CDH Support - support families affected by Congenital Diaphragmatic Hernia through their child's fight against CDH and after.

2. CDH Research - help the research community to find the cause, prevention and best treatments of CDH

3. CDH Awareness - make Congenital Diaphragmatic Hernia as well known as Cystic Fibrosis, Spina Bifida and other health issues with similar occurrence rates

We are able to reach our goals by:

1. CDH Support - continuing to support families through free services such as our CDH HOPE totebags, forums matching programs, conferences, get-togethers, international Ambassadors and more.

2. CDH Research - mange the CDH Patient Registry, continue to fund research grants, request more NIH funding and encourage participation in CDH Research studies

3. CDH Awareness - continue to raise awareness on an international level through family programs, the media and grassroots efforts

CDH International is the world's largest charity for Congenital Diaphragmatic Hernia, assisting over 6500 families in 74 countries. We offer the most services, the most programs and the most hope than any other charity in history for our cause. With 3 Boards (Directors, Medical, Parent Advisory), 100 volunteers and an international support system, we are very capable of meeting all our goals.

As of 2021, CDH international works with families in over 75 countries by providing support and information.

In 2020, CDH became a registered Non-Governmental Organization (NGO) in 5 more countries in addition to the U.S.; the United Kingdom, Singapore, The Netherlands, Hong Kong and Switzerland.

CDH International collaborates with many hospitals, labs, and other charities across the globe on various projects and has become the voice of the CDH community, representing the patient population, pushing research initiatives and leading fellow organizations.

CHERUBS was founded with the sole purpose to make sure that no families have to fight Congenital Diaphragmatic Hernia alone. Since 1995, over 6500 families have become part of the CDHi family.

CHERUBS is the world's oldest and largest CDH charity, founded by 2 moms on a kitchen table with just a typewriter in 1995. The organization was the first to use a model of "support, awareness and research", which has been imitated by 100's of other non-profits for various causes.

In 1997, CHERUBS was one of the first non-profits on-line and has grown to be the worldwide leader for CDH raising awareness through media, social media, and on an international level.

With an annual budget of just $250,000 with a staff of 4 employees and less than 50 volunteers, our organization has an overhead of just 6% and self-audits annually.

CHERUBS helps fight Congenital Diaphragmatic Hernia by providing information, financial grants, scholarships, care packages, connecting families, and hosting local events, international conferences, the CDH Research Survey and much more at no cost to families.

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.
  • Who are the people you serve with your mission?

    CDH International serves patients and families affected by Congenital Diaphragmatic Hernai.

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

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Community meetings/Town halls, Suggestion box/email,

  • 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 identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    In early 2021, we conducted a survey on what were the most important services to our community. Because of the results of that survey, we restricted our patient services, removed some unnecessary projects, created a new team to better serve families and continue to run advisory board.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    It dictates every decision that we make and every service that we provide. Our charity's existence is to serve our patient population in every way that we possible can.

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

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection,

Financials

CDH 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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  • 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.

CDH International

Board of directors
as of 08/30/2022
SOURCE: Self-reported by organization
Board chair

Dawn Ireland

CDH International

Term: 1995 - 2025

Dawn Ireland

CDHi President

Tracy Meats

Patient Advisory Board Chair, Executive Board Member

Nicolle Colvin

Patient Advisory Board Member

Henry Rice

Duke University Medical Center

Patricia Donahoe

Mass General Hospital / Boston Children's / Harvard

N. Adzick

Children's Hospital of Philadelphia

Jan Deprest

Leuven, Belgium

Warren Sumner

Executive Board Member

Matthew Harting

University of Texas, CDH Study Group

Jay Wilson

University of Texas, CDH Study Group

Priscillia Chiu

University of Toronto

N Adzick

Children's Hospital of Philadelphia

Darlene Silverman

Patient Advisory Board Member

Dick Tibboel

Erasmus University MC

Augusto Zani

University of Toronto

Richard Keitzer

University of Manitoba

Wendy Chung

Columbia Presbyterian / DHREAMS

Steadman McPeters

Pediatric Surgery Nurse Clinician

Naomi Wright

Global Initiative in Pediatric Surgery

Giovanna Riccipetitoni

Ospedaledei Bambani Buzzi

Gabrielle Kardon

University of Utah

Kristin Aigner

OSF St Francis Medical Center

Badr Chabin

NHS Trust

Brooke Newman

Executive Board Member

Holden McLemore

Executive Board Member

Derek Bateson

Executive Board Member

Mellissa Reaves

Patient Advisory Board Member

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 2/17/2022

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
Multi-Racial/Multi-Ethnic (2+ races/ethnicities)
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 02/17/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.