CDHi UK on Social Media
CDH International 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.
To participate in these efforts, CDHi has to register as a charity within Europe. After much thought, research and deliberation, the Executive Board of Directors made the decision to register our organization in 2 European countries. This decision was made based on our research relationships in these two countries.
Both chapters will offer research only. Both countries already have smaller organizations that provide 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 country. 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.
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. Our UK solicitors will maintain office business for us in London.
The Executive Board of Directors of CDH International chose the UK because of the ease of being able to work in the same language and because of our many medical contacts and members. The other country (to be announced soon) was chosen because of Brexit and the geographical need to be on the mainland, as well as the necessity to have a more physically convenient and affordable base in Europe.
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.
We will currently not provide any patient services or assistance in the United Kingdom.
CDH International will only collect donations for Congenital Diaphragmatic Hernia Research at this time (after NGO status is approved).
100% of donations to CDH International UK will go to research projects. There will be no overhead, travel, patient services, etc taken from that 100%.
And researchers will not be restricted as to what organizations or patient populations that they can work with. This is currently a problem with some research funding. CDH International believes that research collaboration should occur with as many stake holders as possible to further funding and to hasten results.
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.
We would like to introduce you to the first of these Boards, the CDH International UK Board of Trustees: