UPDATE 8 June 2020: CDH International is now a registered charity in the United Kingdom. Charity no. 1189819
CDH International – Registered UK Charity no. 1189819
http://www.cdhi.uk
Phone – +44 0788 747 4571
Direct E-mail – uk@cdhi.org
Mailing Address – CDH International, 77 Victoria Street, Box 135 London SW1H 0HW, UK
Donate here – https://cdhawarenessshop.org.uk/products/donate-to-cdh-research
CDHi UK on Social Media
CDH International has become more involved in research in Europe in the past 5 years and spent much time building collaborations with several medical groups, hospitals and research initiatives, and hopes of joining the European Reference Network.
To participate in these efforts, CDHi had 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 3 European countries. This decision was made based on our research relationships in these three countries; including the United Kingdom.
The UK NGO will offer research only. As such, we made the decision to only include CDH Researchers on the Board of Trustees and made sure to include at least 50% who have a personal CDH connection.
As researchers and professionals, our Trustees have vast experience and connections to further our great work in Congenital Diaphragmatic Hernia research across the globe.
100% of all donations and fundraising profits will go directly to CDH research.
Our UK CDH Awareness Shop is now open! – https://cdhawarenessshop.org.uk/
Our UK NGO will not fund salaries, travel, support projects or any other schemes. The US charity will continue to fund research as well and will continue it’s support of other charities and their projects; including the UK NGO and awareness light ups in the UK for 19 April, global CDH Awareness Day.
We are currently putting together several new projects to work across the board to help all CDH charities, as well as our new UK CDH Awareness Shop and other fundraisers.
CDH families in the UK are invited to participate through the CDH Patient Registry, fundraising to support CDHi (CDH International) UK and participating in any US charity schemes and support services.
The UK charity is legally a separate entity from the US charity, with 2 different directing Boards. The Medical Advisory Board will support both charities.
The UK charity will follow all GDPR and HIPAA regulations and is working closely with the US charity, ACDHO charities, the WHO, GICS and other research entities to make sure that every law is ethic is followed.
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.
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.
Meet the CDH International Trustees for the UK:
Posted in 2019:
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.
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.
The UK CDH Awareness Shop is now open! https://cdhawarenessshop.org.uk/
We have lots of exciting news from CDH International in the UK and globally in 2020 to celebrate our charity’s 25th Anniversary as a registered nonprofit. Stay tuned!!!
Donate to CDH Research – https://www.paypal.me/CDHInternationalUK
