CDH International is now CDH Research International
A new name. A stronger focus to stop Congenital Diaphragmatic Hernia.
Our Executive Board of Directors has decided that after 30 years, it’s time to fully move towards focusing solely on Congenital Diaphragmatic Hernia. We have already participated in research for decades now, but we are streamlining:
- Research Collaborations with over 30 universities and labs
- Hospital Accreditations – our first applicant is already in the process of accreditation
- Global Patient CDH Registry – working with WOFAPS, we have a new admin and are undergoing upgrades
- Research Grants – we have granted funds to 18 hospitals and labs and hope to award more grants in 2026. If you would like to create a fund in honor/memory of someone, please contact us.
- Research Legislation – we will continue to work with other patient communities on joint legislation, as well create new legislation
- Patient Advocacy – in 2026 , the old CDH Forums will transform into the CDH Advocacy Network; a place where families can continue to share their stories, access educational materials, learn how to advocate, and join awareness raising efforts, including projects for global CDH Awareness Day.
Our organization has helped 1000’s of families affected by Congenital Diaphragmatic Hernia over years with financial assistance, care packages, get-togethers, support chats, scholarships and much, much more. We are very proud of all the direct help we have given so many and we cherish all the families that we have met. We have every intention on staying in touch and keeping up with the children we have given our hearts to for the last 30 years. CDH patients have always been, and will continue to always be, the most important focus of our work.
After 30 years and seeding so many other organizations who are offering the same services that we offered, it makes more sense economically and professionally to not waste valuable time and resources by duplicating efforts and to focus on what is needed most – Congenital Diaphragmatic Hernia Research.
Through our research projects and relationships with leading researchers, universities and labs, we are privy to much information that is not yet public. It is this research and this information that is currently fueling our efforts.
By raising $10,000,000 for just one multi-center research project, there is a strong chance of eradicating CDH for 95% of patients. We have raised $4,000,000 before. With your help, we know that we can meet this goal and fund this miracle research to save the lives of 10,000’s of babies every year.
By working with another multi-center project, we can help ensure longer and healthier lives for the CDH patients who survive until discharge, and giving them a stronger voice in research.
By working with other institutes in 3 other studies, we are helping to find better fetal treatments for CDH.
By accrediting hospitals, we can bridge the huge gap between what patients want and what hospitals think that they need, while pushing for the most comprehensive, cutting edge care on every level to not only encourage top level medical care and encouraging all CDH hospitals, but allowing more children to receive better care, and relieving families of the much of the burden of relocating so far away. With a whole family approach and whole medical world view, we can give parents more information to make choices that work better for their families without sacrificing care for their baby with CDH.
Through Standards of Care, we are helping to create global measurements of mortality and morbidity to give us accurate data on CDH and what truly works best for these patients, while giving patients in LMIC’s a chance to survive that most currently do not have with a survival rate of less than 2% (as compared to the average survival rate of 50% in Higher Income Countries).
By working with 3 other centers, we are conducting the first comprehensive epidemiological study of CDH in almost 40 years and making sure that every patient with CDH is counted and not just those who survive until birth, surgery, or discharge.
By continuing to run the natural history registry, we are giving patients and parents control over their own data and infinite opportunities to participate in research.
By continuing our work in various research alliances and associations, we are furthering work not just for Congenital Diaphragmatic Hernia patients, but all patients with congenital anomalies that require surgical care.
If you really want to make a difference and save lives, please consider donating and fighting alongside CDH Research International, the world’s oldest, largest, leading – and now the first and only research – charity in the fight against Congenital Diaphragmatic Hernia.
The end of CDH starts now. Stay tuned.
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