Image: Neale Parke
Welcome to the Chromosome 18 Registry and Research Society (Europe).
We are affiliated to the Chromosome18 Registry and Research Society based in San Antonio, Texas. Our mission is to help individuals with chromosome 18 abnormalities overcome the obstacles they face so they might lead happy, healthy and productive lives.
We aim to bring the latest research done by the Chromosome 18 Registry and Research Society in Texas to people affected by all chromosome 18 disorders and their families in Europe. To do this, we run family conferences where affected children and adults, parents, siblings, relatives, friends and professionals get together to laugh, learn and play together.
To our wonderful membership
Your new Ch18 Europe Management Committee have had their first meeting and are steaming ahead with plans and structures for the organisation. You will have your first Newsletter in under a week and already have been reminded to fill in your conference feedback forms.
At the AGM in Glasgow we filled the committee and have now appointed keepers for the roles that became vacant at the AGM. Richard Davison will be Convenor, Sara Jackson will be Secretary taking over from Bonnie, and to replace Carol we are looking for a Treasurer.
As I’m sure you are aware, the Treasurer role is a vital one and, outside Conference time takes just a couple of hours a week. Carol will help bring up to speed whoever steps up and be there for questions as they go along – we will support this person every step of the way. Carol has done this role since 2010 and, in case you didn’t know, is not a parent or grandparent of an affected child.
So perhaps you know someone with a financial background who might have some time and passion for your family who could lend us some of that time?
Please help us to think and open your contact books to help us to find our Treasurer.
Just listen to what Carol has to say about her last 8 years with the charity:
I have been the Treasurer for Chromosome 18 since 2010 prior to the first Conference held in Glasgow. No members of my family have a Chromosome problem, but I became involved because I knew a lovely little boy – who is now a young man – and wanted to help his family.
‘Since becoming Treasurer I have attended all the conferences and have enjoyed watching these young people grow and gain so much from meeting everyone at Conferences. I have also enjoyed my own Conference experiences, meeting new families and catching up with the wonderful ‘Chromosome Family’ that I now I will always be made to feel a welcome part of.’
Thanks for anything you can do to help. Please contact Jeni (email@example.com) or Sara Jackson (firstname.lastname@example.org) with any ideas or for more information.
Feeding difficulties questionnaireRichard Davison has been working to develop research looking at the feeding difficulties experienced by our children as there is relatively little information on this topic....
Feeding difficulties questionnaire
Richard Davison has been working to develop research looking at the feeding difficulties experienced by our children as there is relatively little information on this topic....
You can download a copy of the conference program for Glasgow here. It’s only a few weeks away now! Download conference programme
Glasgow Conference 2018
If you are coming to the conference in Glasgow on 22-24 June, please complete your conference booking by clicking on the link here. If you have any questions, please feel free to contact us!
If you would like to stay in the Glasgow Doubletree Hilton over the conference this year, you can book using this link which will give you a discount over the usual room rate. Click here to book
Newsletter – January 2018
You can download the latest newsletter, which contains details of the Glasgow conference in June, by clicking or tapping here.
Who Are We?
The Chromosome 18 Registry and Research Society (Europe) is a charity set up to bring European families affected by any chromosome 18 abnormalities together to share information and experiences. Our organisation covers all chromosome 18 abnormalities: 18q-, 18p-,Ring 18,Tetrasomy 18p and inversions of chromosome 18.
The charity was founded by an affected woman, her mother and the grandparents of a young boy, all of whom lived near Glasgow. The organisation was registered as a charity in Scotland in 2009 (SC040399). We now have a committee of eight volunteers, all of whom are related to people affected by Chromosome 18 disorders.