BREAKING NEWS! CDH International is proud to announce our participation in the new Surgical Anomalies Research Alliance!
From the SARA Website:
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.
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 Megan 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
- Congenital Hiatal Hernia
- Esophageal Atresia
- Hirschsprungs’s Disease
- Intestinal Atresia
- 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 us at firstname.lastname@example.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.