Reflections on the past 25 years by the CDH International team:
When we started, we were the only CDH charity that we knew of. Then we found another halfway around the world in the Netherlands and quickly became friends.
All was wonderful in our CDH community for several years….. until around 2001, when the splintering began around the time of the invention of social media.
For years, we fought against slander and libel by competing groups, trademarks, attacks on families and all sorts of disgusting behavior by the very people who should be working together to help children born with Congenital Diaphragmatic Hernia. But that’s another blog post.
This post is about how we fought back and rose above those with bad intentions to give patients, families and researchers a way to recognize the cream of the crop of the CDH community – those who work together.
In 2013, the community was divided and sick of the negativity caused by a few splinter groups. We were tired, heartbroken and despondent when we caught a big break in the drama – we beat the trademark on “Congenital Diaphragmatic Hernia Awareness”. Good had won. Our kids had won.
With this determination to not give up and let evil in any form win against these children, we worked to combat the nastiness. On our lead and with the other charities sick of competition and drama and the research groups disgusted by the competition and drama, we decided to band together.
The Alliance of Congenital Diaphragmatic Hernia Organizations (ACDHO), an International group of professional charity and research organizations was created to work together to better serve babies and families affected by Congenital Diaphragmatic Hernia.
Today, there are 25 member groups of ACDHO and last year, a Charter was created pledging that every member work positively, collaboratively, honestly and legally to help all of these children.
With the new global CDH Awareness Day created a decade ago, families in all groups voted on a new CDH Awareness Ribbon owned by no one. ACDHO charities all participate. No separate days, colors and ribbons. No competiting. No division. A joint, collaborative wave of awareness around the world. None of us putting ourselves or our charities before the children.
So about that old gossip “CDHi doesn’t work with other charities” or “Dawn wants to run the only CDH charity…”
- CDHi / CHERUBS was founded solely on our own efforts. We never had help from anyone else to start our charity and never hurt or used others to grow our charity.
- We whole-heartedly helped 2 other charities get started in their countries after volunteering for us for years. We gave them everything to get started – with our support and blessing. You can see the evolution of this on our forums, listservs, newsletters.
- We are founding members of ACDHO.
- I personally do 95% of the work at ACDHO.
- I personally designed the ribbon graphic that everyone uses. For free, for all.
- Many CDH charities use our CDH graphics, memes, etc.
- Some other CDH charities use our materials – sometimes we even translate for them and their members.
- We have mentored several other CDH charities.
- We have paid for international conferences when other charities were just getting started.
- We’ve given trophy awards to 4 other CDH charities in honor of their hard work and accomplishments for the CDH community
- Other than the Netherlands, we were the first CDH charity in 74 countries helping families. We don’t step on others “territory.” We don’t see ourselves as having “territory” either.
- We have never and would never say we want to be the only CDH charity in a state or country.
- We never duplicate anyone else’s services – that’s wasted time and resources that could go to other services.
- We will work with any CDH charity that is legal, ethical and non-competitive.
- We cover the costs of lodging for ACDHO charities to the CDH Study Group conferences.
- I personally do all the work to run the ACDHO web site, which we pay for.
- I personally designed all the graphics for ACDHO for free.
- The CDHi teams runs the ACDHO social media, reposting all the other groups events and work – even though they all have admin access to do so themselves.
- We’ve offered use of our CDH Patient Registry to other charities to use – at no cost, with no strings attached, with no breech of patient data.
- In every single speech I give – whether as President of CDHi or as a Patient Advocate – there is a slide listing all the members of ACDHO.
- When we were at international conferences that allow us table space, we also display literature of other ACDHO charities – in their language – that we pay printing for and haul around.
- When we are at big CDH conferences, we make sure that all the ACDHO charities are represented. It’s never solely about CDH International. Ever. It’s about all the children.
- We pull in other groups in ACDHO to research events.
- When someone has to stick their neck out for what’s right for all the children or all the charity – it’s me. And mostly, the ACDHO charities stay quiet and neutral. But like a mother hen, I stand up for them too.
- CDH International is doing the brunt of the work with the WHO and all of the work with the NIH – and the cost to do so – but including other ACDHO charities as equal partners.
- Our volunteers currently do all the work for CDH Awareness Day in gathering proclamations and doing light ups.
- We refer families to other CDH charities often.
- We share ACDHO work on our own social media often.
- We do a lot of the work because the other groups are so much smaller with less resources.
- I work with other alliances for rare disease and am a founding member of the Rare Advocacy Movement to work with other charity leaders and push a collaborative environment.
- I mentor other charities outside of CDH. Several. For free. And help their patients along the way as much as we can too.
We are also working with other large alliances and charities to fight CDH, structural defects and rare diseases collectively. Part of that fight is working together to combat this huge problem of competition among charities directly by bringing light to an issue almost every single medical charity deals with. By doing so, maybe we can convince people to behave, collaborate and put patients before egos.
So who will CDHi not work with? Charities / groups who:
- Are unethical
- Are for profit
- Do anything illegal
- Give medical referrals
- Push families to recruit patients for specific hospitals
- Attack / slander / libel other charities
- Are competitive
- Are dishonest
- Encourage division
It’s that simple. We want to work with good people. We want to help these children above all else. We want to protect families from drama and division. We don’t have time for anything else. Families deserve better.
There’s too much work for any one CDH charity! We need to share the load, work together, not repeat, not compete, and not tear down.
Please before you believe the gossip.. .think about what is being said, who is saying it, and what they gain by saying it ….and how in the world it could be true if we are 25 years old, well respected and fighting the fight for all of us.
Our work speaks for itself.
And join our charity. Join them all. Refuse to be divided by those who are not putting the children first.
So families… if you want to know which charities work together, are ethical, are legal, are non-competitive…. ACDHO is the place to go. Here is the current list. A few new charities will soon be added.
- APEHDia, soutenons la recherche sur la hernie diaphragmatique (France)
- Arianna’s CDH Foundation.
- Baylor College of MedicineCDH Genetic Study*
- CDH International (CHERUBS)
- CDHi Italy
- CDH Norge (Norway)
- CDH Sweden
- CDHi UK
- CDH-New Zealand
- Chloe Tate Foundation (United Kingdom)
- Congenital Diaphragmatic Hernia Study Group*
- DHREAMS Research Study*
- Denmark CHERUBS (Denmark)
- HDC Hérnia Diafragmática Congenita Brasil (Brazil)
- Hernia Diafragmatica Congenita – HDC en Paraguay (Paraguay)
- Incredible Teddy Foundation
- Ireland CHERUBS (Ireland)
- La vida con Hernia Diafragmática Congénita (Spain)
- Mass General Congenital Diaphragmatic Hernia Genetic Research Study*
- Max Richard Thornsbury Foundation
- Ninos Con Hernia Diafragmatica Congenita (Chile)
- Olivia Faith Foundation
- Olivia Raine Foundation
- Peyton’s Promise
- Zwerchfellhernie bei Neugeborenen – CDH e.V. (Germany)
We look forward to working with many new CDH charities in the future to fight Congenital Diaphragmatic Hernia and serve families together with honor, courage and respect.
– Dawn Ireland, President
Alliance of Congenital Diaphragmatic Hernia Organizations (ACDHO) An international group of nonprofit and research organizations working together to better serve patients and families affected by Congenital Diaphragmatic Hernia.
Code of Ethics All members shall adhere to the following. Violations may result in consequences such as a warning, suspension, expulsion from ACDHO, etc.
1. Members have a positive duty to observe the highest standards of truth, accuracy, and integrity with fellow members and professionals, patients, families, the media, colleagues, other organizations, and the public.
2. Members shall treat other individuals with dignity and respect, avoiding extravagant claims or unfair comparisons and giving credit for ideas and words borrowed from others.
3. Members must not engage in any practice nor be seen to conduct themselves in any manner detrimental to the reputation of ACDHO or the reputation and interests of the CDH Research and Medical Nonprofit Communities. Members also shall not intentionally damage the professional reputation or practice of another member
4. Members shall avoid conflicts of interest.
a. Members shall not make medical referrals to any specific doctor(s) or facilities over or above providing patient families with information on which hospitals provide care for CDH. b. Members have a duty to ensure that the actual interest of any organization with which they may be professionally concerned is adequately declared. 5. Members will not disclose confidential information belonging to, or obtained through their ACDHO affiliation to any person, including relatives, friends, and business and professional associates, unless ACDHO has authorized disclosure. This policy is not intended to prevent disclosure where disclosure is required by law. All members are cautioned to demonstrate professionalism, good judgment, and care to avoid unauthorized or inadvertent disclosures of confidential information. Upon separation of a member from ACDHO, he or she shall return all documents and other materials that may contain confidential information.
6. Members must uphold this code and cooperate with fellow members in so doing by enforcing decisions on any matter arising from its application. A member that knowingly causes or permits a colleague to act in a manner inconsistent with this code is complicit to such action and shall themselves be deemed to be in breach of it.
7. Members are required to take all reasonable care that professional duties are conducted in accordance with all requisite laws and without causing offence on the grounds of gender, race, religion, disability or any other form of discrimination or unacceptable reference.
8. Members shall avoid violating rules regarding intellectual property rights within ACDHO.
a. The ACDHO seal is joint property of current members of ACDHO and can only be
b. The CDH Awareness Ribbon is public domain and may be used by any charity or organization, or individual. Similarly, members agree that no entity will own rights to the CDH Awareness Ribbon, CDH Awareness Day (April 19th), or any other graphics, international events, etc. that should belong to all patients and entities wishing to raise CDH Awareness. c. All names, logos, websites, graphics, merchandise, etc. of individual charities within ACDHO are their own intellectual properties and should not be used without prior permission from said organization. d. Members agree to respect the artistic rights of individuals and organizations, and agree not to infringe or compete by creating similar intellectual properties.
Purpose and Goals
- Work together to support and advocate for CDH patients and their families
- Ensure that all CDH patients are referred to an ACDHO partnered charity for support
- Raise CDH awareness worldwide
- Help set standards for new CDH nonprofits and mentor new charities/leaders
All members must sign this charter, thereby agreeing to follow all rules stated therein. The charter may be amended at any point in time, and members will be required to sign any updated versions.