Along with NGO registration in the United Kingdom in 2019, CDH International is excited to announce that our organization is also registering for NGO (charity) status in Italy.
CDHi has become more involved in research in Europe in the past year and spent much time building collaborations with several medical groups, hospitals and research initiatives, including joining the European Reference Network. Because of Brexit, it is necessary to register in an additional European country and Italy is central, affordable and we have a wonderful team of Medical Advisors in place already.
As in the UK, CDHi Italy will offer research only. Italy already has a wonderful support group that provides tremendous parent support and CDHi does not want to impede upon their very important work.
CDHi will continue our work in supporting and mentoring all CDH organizations in ACDHO so that families around the world can receive as much support as possible. We very much look forward to working more with the European groups already established and helping to establish others. Currently, we are working with the French, Spanish and German groups to translate our research survey so that they too can work with a national natural history database and publish as well.
At present, there is no plan to fundraise in either the UK or Italy. Work in these countries will be funded by grants from the main office. Those who choose to donate to either of these chapters of CDHi will see their donations go strictly to research. Both NGOs are run solely by researchers in volunteer roles. Donations will not be accepted to either charity until both commissions have finished paperwork. Currently, you can donate to CDH International in the United States to the research fund to help further this work.
Patients and families can help further the research work by CDH International by participating in the CDH Research Survey at http://www.cdhresearch.org
Boards of Directors have been created for both new NGOs (Non-Government Organizations), solicitors retained and busy with the registration process and plans made to participate in even more research efforts.
We would like to introduce you to the first of these Boards, the CDH International UK Board of Trustee:
In the spring of 2019, our President, Dawn Ireland, will begin to split her time between the US and Europe to work closely with the World Health Organization and the many research initiatives and conferences in Europe including the European Research Network. We will have an office located in Verona, Italy that will serve as the European base of our organization.
We are extremely grateful for all the many months of help that our Medical Advisory Board has given and their support for these new chapters.
The patient support department, CHERUBS, run by Tracy Meats, will continue to support families from any countries that come to our charity for help but we will not actively seek out families in any European country except for research purposes and will refer families to other charities within ACDHO as appropriate.
CDH International is also working to gain NGO status in Canada by Fall, 2019 and is becoming more involved in mentoring other charities and participating in research in Africa, South America and Asia.
Not only will all of this help to further Congenital Diaphragmatic Hernia research, but allow us to raise CDH Awareness, promote April 19th more globally, and give CDH a larger voice to make a real difference in fighting this monstrous birth defect.
CDH International is proud to announce our Board of Trustees for our Italy NGO:
- Pietro Bagolan, MD – Ospedale Pediatrico Bambino Gesù, IRCCS, Roma, Italia
- Mauro Longoni, MD – Harvard Medical School, Massachusetts General Hospital
- Francesco Morini, MD – Ospedale Pediatrico Bambino Gesù, IRCCS, Roma, Italia
- Giovanna Riccipetitoni, MD – Buzzi Children Hospital, Milan, Italy
- Augusto Zani, MD – University of Toronto, Hospital for Sick Children
- Dawn Ireland – President of CDH International
Photo features Trustees, Drs Zani and Riccipetitoni and Dawn Ireland, as well as 2 other Advisors.
