2021 Year In Review

Updated on January 25, 2022December 28, 202158 min read

Many charities folded in 2020… and 2021… CDH International did not even though donations are down 50% from 2020.

Despite many challenges, our charity has still grown, our projects are proceeding, our team is working hard and we continue to serve the Congenital Diaphragmatic Hernia community to the best of our abilities.

In 2021 we continued to run 6 charities in the United States, the United Kingdom, the Netherlands, Switzerland, Hong Kong, and Singapore and even added Canada.

CDH International has always been the underdog charity. We have never had rich benefactors, government funding, or even grant funding. We started as a grassroots charity, built the CDH community from nothing, and now even though we still do not have the funding needed, we constantly hurdle obstacles, we now compete with social media for awareness, volunteers, and funding against a million distractions from the cause; we are the world’s oldest, largest, and leading charity for Congenital Diaphragmatic Hernia.

We have done it all on our own, while lifting others up, learning along the way, and always, always putting the children first. We collaborate with other CDH charities, universities, research groups, and other charities around the world, and 2022 will bring great things for all our patients and families.

Look at what 2021 bought despite a two-year global pandemic:

CDHi Medical World News for 2021

CDH International creates the world’s first blockchain CDH Database with the conversion of the CDH Patient Registry to the WOFAPS (The World Federation of Associations of Pediatric Surgeons)
Co-Author of Lancet Publication; “Mortality from gastrointestinal congenital anomalies at 264 hospitals in 74 low-income, middle-income, and high-income countries: a multicentre, international, prospective cohort study”
CDHi helps to secure funding that helps the Zani Lab to discover a way to grow lungs restricted by Congenital Diaphragmatic Hernia
2021 International CDH Family Conference held virtually
CDH International becomes Co-Founder of the Surgical Anomalies Research Alliance (SARA) to head up work with the WHO and WOFAPS
CDHi Welcomes Dr. Charles Carapinha, MBBcH (Wits), MRCS (Eng), FC Paed Surg (SA), MMED (Surg), MPH (Liverpool) from the Chris Hani Baragwanath & Charlotte Maxeke Johannesburg Academic Hospitals and the University of the Witwatersrand in Johannesburg to the Medical Advisory Board
CDH International Welcomes Florian Friedmacher, MD, MSc from The Royal London Hospital London to the Medical Advisory Board
CDH International Welcomes Jason Miller as Registry Administrator
CDH International Welcomes Intern Maria Harb to the Research Team
CDH International Joins the G4 Alliance
CDHi is Invited to Attend Meetings at the United Nations
CDHi Attends the 2021 Global Initiative for Children’s Surgery Meeting and leads the Patient Advocacy Committee
CDH International the World Health Assembly
CDH International Attends the Global Health Sumit
CDH International Leads Panels at Bio Data World Congress 2021 in Basel
CDH International Speaks at the 2021 Rare Fair
CDH International Speaks at 24 Hours of Rare
CDHi Participates in Symposium on Congenital Diaphragmatic Hernia
CDH International Participates in CDH/FETO Lecture with CHOP
CDH International Attends the APSA (American Pediatric Surgical Association) virtual conference
CDH International Attends the BAPS (British Association of Pediatric Surgeons) virtual conference
CDH International Attends the EUPSA (European Association of Pediatric Surgeons) conference in Athens
CDH International Attends the Society of Maternal Fetal Medicine Conference
CDH International Attends the 2021 Patients As Partners Europe conference
CDH International Attends RARE 2021
CDH International Attends the EURORDIS RARE 230 Event
CDH International Attends Rare Disease Day at the National Institutes of Health 2021
CDH International continues to be a part of the CDH Study Group, with a focus of helping to create a Global Standard of Care for Congenital Diaphragmatic Hernia
CDH International continues our work building a team for the WHO Global Standard of Care for Congenital Diaphragmatic Hernia
CDH International collaborates with Fondazione IRCCS Ca’ Granda, Ospedale Maggiore Policlinico Milan (Italy) and Associazione Fa.B.E.D. Famiglie di Bambini con Ernia Diaframmatica on a research project into the effects of COVID-19 on Congenital Diaphragmatic Hernia patients
CDH International and the University of Toronto do a joint study on older CDH survivors
CDH International continues partnership with Fetal.ist
CDH International Attends 2021 NORD Breakthrough Summit
CDH International Attends the 2021 Global Genes Conference
CDH International Participates in 2021 Patient Assistance &Access Programs Critical Update Conference
CDH International Participates in Canadian Organization of Rare Disorders Rare Disease Day 2021 Conference
CDH International Attends the NORD Living Rare Forum
CDH International Attends the 2021 Rare Diseases International Assembly
CDH International Attends the 2021 J.P. Morgan Healthcfare Conference
CDH International Attends the 2021 RE(ACT) Congress and IRDiRC Conference
CDH International Attends the BIO Patient Advocacy Coffee Chat
CDH International Attends the 2021 DIA Conference
CDH International continues work with Canadian Organization for Rare Disorders
CDH International continues work with EURORDIS
CDH International continues work with Rare Diseases International
CDH International continues work with Global Genes RARE Foundation Alliance
CDH International continues membership in ELSO
CDH International becomes Co-Founder of the Worldwide Rare Advocacy Partnership for Rare Diseases
CDHi President Attends EURORDIS Summer School for Rare Disease

CDH International News & Events for 2021

CDH International becomes an NGO in Canada
CDH International expands work to 84 countries
CDH International Provides Support Services
CDH International NGO continues work in the United Kingdom
CDH International NGO continues work in Hong Kong
CDH International NGO continues work in Switzerland
CDH International NGO continues work in the Netherlands
CDH International NGO continues work in Singapore
CDH International welcomed over 350 new patient families and researchers
CDH International continues to provide accurate, unbiased information on Congenital Diaphragmatic Hernia, patient services and a safe, supportive environment for all CDH patient families.
CDH International Introduces Umbrella Charities
CDH International welcomes Brooke Newman to the Executive Board of Directors
CDH International welcomes Holden McLemore, Esq to the Executive Board of Directors
CDH International welcomes Derek Bateson to the Executive Board of Directors
CDH International welcomes David Holt to lead Fundraising Executives Team
CDH International welcomes Mellissa Reaves as Awareness Team Leader
CDH International welcomes Jill Gibson to the Fundraising Executive Team
CDH International welcomes Zachary Gallegos to the Fundraising Executive Team
CDH International welcomes Shelby Gallegos to the Fundraising Executive Team
CDH International welcomes Haylee Densmore to the Fundraising Executive Team
CDH International welcomes Kaylene Moore to the Fundraising Executive Team
CDH International welcomes Madison Carpenter to the Fundraising Executive Team
CDH International welcomes Mary Grance to the Fundraising Executive Team
CDH International welcomes Curlene Schmidt to the Fundraising Executive Team
CDH International welcomes Kayla Scimeca as an Office Intern
Creation of New CDHi Fundraising Executives Team
Creation of New CDHi Patient Advocacy Team
Creation of New CDH Support Team
The Scottish Registry of Tartans Officially Recognizes the “Congenital Diaphragmatic Hernia Awareness Tartan” and the “Congenital Diaphragmatic Hernia Awareness Dress Tartan”
CDH International Delivers “Dear Nicholas Sparks” Book to Author, Nicholas Sparks
CDH International Wins 2021 Transparency Award from Guidestar
CDH International Wins 2021 Great Nonprofits Award
CDH International President Nominated for WEGO Health Award
CDH International President Nominated for Global Genes Advocacy Award
29 New Episodes of the CDH Radio Show
Monthly virtual Global CDH Race for Research
2021 CDH Telethon
2021 CDH Awareness Day
2021 Awareness Day Light Ups
2021 CDH Awareness Month Proclamations
2021 CDH Concert
CDH International Begins Accepting Cryptocurrency Donations and Shop Payments
CDHi Attends the NORD “Navigating Diversity, Equity, and Inclusion (DEI) in Rare Disease Non-Profit” Seminar
CDH Interantional 25th Anniversary Yearbook Published
CDHi Chat on IEP and Behavorial Issues
CDH Parent Reference Guide added to Kindle
CDH Parent Reference Guide translated into Greek
CDH Parent Reference Guide translated into Spanish
CDH Parent Reference Guide translated into French
CDH Parent Reference Guide translated into Russian
CDH Parent Reference Guide translated into German
CDHi Photo Challenge
CDHi Works With Arianna’s CDH Foundation for CDH HOPE Totebags
CDHi Works with Bracelets for George for CDH HOPE Totebags
2021 Virtual CDH Ribbons
Storytime with Heidi-Marie
CDH Awareness Spirit Week
Weekly Chats in CDHi Facebook Group
12 Days of Christmas Contest
#snowangelchallenge for CDH
First CDH Charity on TikTok
2021 National Children’s Memorial Day Virtual Memorial
Over 300 items to CDH Awareness Shop (US) and CDH Charity Shop (UK)
Over 14,000 new social media posts
Over 2400 new awareness videos
CDH Awareness Items added to Amazon
CDH Awareness Items added to Wal-Mart.com
CDH Awareness Items added to Ebay
CDH Awareness Items added to Facebook shop
Over 100 CDH Research Articles Shared
CDH Awareness Shop Black Friday Sale
CDH Awareness Shop Cyber Money Sale