Introducing SARA

SARA (Surgical Anomalies Research Alliance) was created by the founders of the world's largest charities for the 2 most common Congenital Anomalies treated with pediatric surgical care.  Collectively, the leaders of these organizations have over 50 years of experience in patient advocacy, research, and awareness.

CDH International was founded by Dawn Ireland in 1995.  CDHi runs the CDH Patient Registry with over 6500 patients in 74 countries, is a registered NGO in 6 countries, has raised over $2,000,000 and actively pushes all patient communities to collaborate to conserve resources and fund more research.  

CDH International is also a founding member of ACDHO.

The Global Gastroschisis Foundation was founded by Meghan Hall Rauen in 2009 after the sudden death of her 3 and a half-month-old son, Avery, from Gastroschisis.   The charity was originally named "Avery's Angels" but was renamed and restructured in 2021.   It is the only charity for the anomaly and serves patient families worldwide.

Both organizations happened to start in the same town in North Carolina and both by mothers who lost their sons to congenital anomalies.  Both organizations grew to become international powerhouses in patient advocacy and support.   Dawn Ireland has mentored Meghan Rauen since the beginning of The Global Gastroschisis Foundation. 

As both nonprofits grew and looked to help patients on a more international scale, they begin to represent these children in pediatric surgical groups, the rare disease sector and the congenital anomalies sector worldwide.  And as the charities expanded their work, they both became very frustrated with the lack of adequate care for the patients in Lower and Middle-Income-Countries, the absence of Standards of Care and the dismissal of patient and family needs outside of the hospital.

When the EU created European Reference Networks to create registries and standards within Europe, it becomes increasingly frustrating because it was not inclusive of all patients, in all countries and it duplicated registries and work being done globally.  Patients were not represented by appropriate advocates, and lack of collaboration and the overabundance of competition and politics was detrimental to global research.

The children were losing again because of the short-sightedness of adults.

Meanwhile, CDH International was meeting with the World Health Organization to talk about creating a Standard of Care and Standards Measurements of Mortality and Morbidity for Congenital Diaphragmatic Hernia but saw such a great need for like Congenital Anomalies that it seemed completely natural to bring all the leaders in to help more of our children.

It never set well with either charity that one person or small group in one area of the world could dictate the care of 1000's of other patients without any real experience or collaboration.  Patients in Europe did not receive the same medical care from country to country and certainly not the same care as that given in the US or South Africa or Venezuela.  And the patient groups in all countries should be able to work together without any power struggles, membership fees, voting constraints, inner political drama, etc.  

Many discussions later, CDH International and the Global Gastrochisis Foundation decided to team up to help all their patients and more by creating a truly international, collaborative, supportive, and productive alliance for Congenital Anomalies patients that did focus on one hospital, country, continent or group.  An alliance that did not exclude patients from LMIC's and did not exclude any nonprofits from helping to save these children.

At the same time, an overabundance of new nonprofits and social media groups with little to no research experience were demanding a seat at tables, overwhelming and frustrating researchers in quests to be validated.

All stakeholders were frustrated and children were still dying.  

Communities needed a time out to really reevaluate what was important and how to achieve research and cures for patients in a much more organized, professional, and collaborative way that reflected the respect and team efforts that these children deserve.

Every single one of these children deserves a chance for survival and good quality of life and it will take every single nonprofit and other stakeholder working collaboratively to make that happen.

So SARA was born.  

The Surgical Anomalies Research Alliance includes any registered nonprofits, universities and other research facilities that work with surgically repaired congenital anomalies and who agree to uphold the standards and ethics as listed in the Charter.  

The name of the alliance was chosen based on the obvious work that we do but also in a nod to Sarah of many religious teachings who was a mother who spent many, many years waiting for and wanting a healthy children and was granted a miracle with a healthy son when all odds were against her.  With these same hope, we work together for miraculous children too.

The structure of SARA is simple.

Who can join?

Any registered nonprofit or research center that works with patients directly through support or research projects for the following congenital anomalies and who also signs and follows the SARA Charter:

• Anorectal Malformations
• Cleft Palate
• Congenital Diaphragmatic Hernia and Eventration (All ACDHO charities have been invited to join)
• Congenital Hiatal Hernia
• Esophageal Atresia
• Gastroschisis
• Hirschsprungs's Disease
• Intestinal Atresia
• Omphalocele
• Spina Bifida
• Tracheoesophageal Fistula

How much does it cost?

There will never be a membership fee to join SARA.  All administrative work is done by volunteers, website hosting, and design donated.

How does my organization or facility join?

An application form will be posted shortly.   Once you apply, current members will receive the application and have 10 working days to review and vote on your application.  If your organization or facility is legally registered, is known to be ethical and collaborative in research projects and agrees to sign and follow the Charter then you will be accepted into SARA.

If you would like the application e-mailed to you, please reach out to dawn.ireland@cdhi.org 

What happens after we join?

You will gain access to our platform to work with the other members on projects.

Can we participate in all research projects?

Yes, in some form.  However, many projects will have 1 representative from each patient community that is experienced in both research and direct patient care so that we do not overwhelm researchers.  That representative will work directly with all leaders in that patient community and liason with the research projects.  All participating organizations will be listed as co-authors in publications.

What else can we do in SARA?

• Work together to create a global patient registry that is owned by the patients themselves and not any one organization, government or research center
• Jointly fund research grants 
• Mentor other organizations 
• Co-author white papers

The goal of SARA is to positively support ALL nonprofits who work with Surgical Anomalies and to foster a global community of support, collaborative and aggressive research to save our children. Research projects, collaborations, partnerships, and publications.

The member organizations of SARA are involved with many pediatric surgery associations and projects.   

When one member organization participates in a research project, they try to pull in as many other congenital anomaly representatives from SARA as possible to give all of our children the opportunity for more research.

Below are some of the many projects that our members are participating in and the patient groups that they are representing:

WHO Collaboration for a Standard of Care for Surgically Repaired Congenital Anomalies

• CDH International - Congenital Diaphragmatic Hernia
• The Global Gastroschisis Foundation - Gastroschisis

Global Initiative for Children's Surgery

• CDH International - Congenital Diaphragmatic Hernia
• The Global Gastroschisis Foundation - Gastroschisis

NICHD Kid's First Database:

• CDH International - Structural Anomalies

G4 Alliance

• CDH International - Congenital Diaphragmatic Hernia

Children’s Surgery Outcome Reporting programme (CSOR)

• CDH International - Congenital Diaphragmatic Hernia

Friends of NICHD

• CDH International - Congenital Diaphragmatic Hernia

New ACDHO Members

We would like to welcome quite a few new members of the Alliance of Congenital Diaphragmatic Hernia Organizations!   

http://acdho.blogspot.com/p/acdho-member-organizations.html

CDH Charter

The member charities of ACDHO (the Alliance of Congenital Diaphragmatic Hernia Organizations are proud to announce the creation of a Charter.  

As was announced on the 2019 CDH Telethon, 5 members of ACDHO began creation of a charter over 2 years during the CDH Study Group Conference in Liverpool.   The Charter is finally complete and public and charities are signing on.

This Charter is meant to inspire the entire Congenital Diaphragmatic Hernia Community to work together for our common goals, to be respectful of the work of others and to collaborate professionally in the fight against CDH.

ACDHO includes any licensed and legal CDH charity that meets the professional guidelines as outlines.   New membership is voted on by all current members, is free and does not restrict charities in any way.   ACDHO was founded over a decade ago.

ACHDO on Facebook - https://www.facebook.com/CDHorganizations/

ACDHO Web Site - http://acdho.blogspot.com/

ACDHO CHARTER

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.

ACDHO on Facebook

For more to up-to-date news on the member organizations of ACDHO, please visit https://www.facebook.com/CDHorganizations/

(pictured above are the leaders of 4 CDH organizations)

2017 International CDH Conference

Join us for the 2017 International CDH Conference, hosted by CHERUBS.

Register to attend the largest annual CDH event and the first conference in the midwest in several years!

https://www.eventbrite.com/e/cherubs-2017-international-cdh-conference-tickets-34729628253

https://www.facebook.com/events/1195689943852269/

Meet other CDH families, learn the latest CDH research, share your stories, build new relationships and work together to help the cause.   This event is fun for the whole family, free and an excellent source of CDH support.

Join 5 CDH charities at the 2016 International CDH Conference in Pari

Join 5 CDH charities at the 2016 International CDH Conference in Paris Aug 4-8  http://www.cdhconference.org

2016 International Congenital DIaphragmatic Hernia Conference

Holidy Inn Paris - Porte De Clicy
August 4 - 8, 2016
www.hiparisclichy.com

Rooms are 130 Euro for 2 people.   Reservations can be made by e-mailing lo@hiparisclichy.com

Because there is such a huge need for more information and support in Europe, we work with other ACDHO organizations to bring resources to more families there by holding our conference in Europe every other year (and American conferences in between).

Please register every member of  your family to attend.  Attendance is free.

Register at https://www.eventbrite.com/e/2016-international-congenital-diaphragmatic-hernia-conference-tickets-25801962364

Speakers this year:

• David Kays, MD
• CHERUBS (International)
• Stichting Hernia Diafragmatica (Netherlands)
• APEDHia (France)
• Hernie Diaphragmatique - groupe de soutien (France)
• La vida con Hernia Diafragmática Congénita (Spain)
• More to be listed soon!