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.
European Conference update
Welcome to our new and improved website everyone.
Your committee are working hard to put the plans in place for the 4th biennial European Conference which will be taking place in Rome from August 5th-7th 2016.
This year again we will be in the safe and capable hands of our Italian family from Agemo 18, with happy memories of how well they looked after us back in 2012 in Milan.
We have a great programme coming together so look out for emails from Bonnie McKerracher with details and forms and everything you need.
Our membership across Europe work hard to fundraise for us all year round, and every penny we spend on our conferences has been raised by them/you. These hard earned pennies and cents pay for the speakers, the food, the translation and all we can do to make this a special weekend.
For those of you who have attended before, we are planning to give you as good, happy and fulfilled a weekend as we did in Glasgow, Milan and Manchester and we look forward to welcoming you back. But for those of you who haven’t managed to join us before, we want to tell you about two things that you might not realize this weekend will give you.
Information. Direct from the clinical study based in Texas from Janine Cody and the team in Texas, we get an update on their work and all they are doing to give affected families and children a shot at a better, happier, healthier life.
Understanding. You will find that as you register, you will begin to feel at home. Regardless of where you are from and what language you speak, you will be surrounded by people who understand what it is like to be affected by a chromosome 18 condition, or be the carer and family of someone affected. Over the years we have found that you can’t put a price on that kind of feeling, which is why people find a way to attend, either in Europe or the US, year after year.
Our conferences are organized and attended by people who know the challenges of travelling with health issues in mind, so if you need any help planning, please contact the committee and we will do our best to advise you.
We know that life is busy and that money is tight, so we will do our best to publish anything useful after the conference for those who can’t make it.
For those who can, we look forward to welcoming you with open arms, hugs, hello’s and headsets for translation, and for food and drink and chats in the bar late into the night.
Draft conference schedule
The initial conference schedule has been published.
The 4th Family Conference is taking place in Rome over the weekend of August 5th to 7th 2016. Below is a link to allow you to book rooms in the hotel and a code to add in order to get our special rate. The…
Rome confirmed as venue for our 4th European Summer Conference
The fourth Chromosome 18 Europe conference will take place in Rome on the 5th, 6th and 7th August. The venue is the Rome Marriott Park Hotel. More details will be available over the next few weeks.
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.