Image: Neale Parke



Important – 2020 Rome Conference Postponed

Dear Members and friends

The Management Committee last night took the difficult decision to postpone July’s conference and instead work to reschedule it for Summer 2021.

Please see below for the factors that made up our decision and vote:

1) The situation in Italy is uncertain and as a registered charity populated by people with medical complications, we have a Duty of Care to provide a safe environment for our members.

2) We also have to run a cost-effective conference that doesn’t incur any avoidable losses, because our charity and membership work hard during the time between conferences to build up the funds, and every penny matters for our future survival.

3) Many of the Agemo families who would have made up a big part of our numbers are unable to travel, and unsure when those restrictions will end. Our thoughts are with them as they work to keep their families in good health.

4) Italy also has now banned any public congresses/conferences and this again could continue for months.

5) Thanks to Sarah Russotti we should be able to cancel and rebook the conference with minimal cost incurred.

6) This isn’t about media hype, rather personal responsibility for our families and their particular needs, and it has weighed heavily on all of our shoulders.

The committee will now negotiate with any other elements that we have booked to ensure that we mitigate losses, and we are confident that we can do this effectively. By acting now we have a greater chance of achieving this.

Committee members also have to cancel our flights and holidays, so please be in contact should you need any advice on how to go about this most effectively. We are told they may block travel to Rome sometime over the next two weeks, so keep an eye out for that, but we hope you are able to postpone and re-book flights.

We will be dealing directly with the hotel, but it may be worth emailing them at the end of the week to check your situation, and be in touch asap if there is any problem.

As always we are here to discuss your situation should you need, and we are truly sorry for the stress and upset that cancelling might bring you.

On the bright side, this allows us to spend another year raising vital funds for our little charity.

Stay well and safe and thanks for understanding.

The Management Committee

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.

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.