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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.

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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.

AGM

Our AGM takes place on the 28th July 2019. If you are a member we’d love you to take part. You won’t have to travel, you just need to make a phone call.

Please check your inbox for details

If you haven’t received details on how to dial in, please contact Jennifer, the Membership secretary; ch18eurmembership@gmail.com

If you could spare just 10 minutes, it would be a great help. Thank you.


Sunflower Lanyard Scheme

Yesterday on BBC Radio 5 there was significant discussion about this scheme. The scheme started at Heathrow Airport Passengers with Additional Needs/Hidden Disabilities can wear this lanyard or pin to make the staff aware of their hidden disabilities, allowing their teams to tailor their approach. You may use the lanyards or pins whether or not you have requested assistance.

This is now more widespread and available at most UK airports, with Sainsbury’s and Tesco supermarkets trailing the scheme in some of their stores. You can request the lanyards at most UK airports. For example you can email Edinburgh Airport and they will send it out to you, not sure if this is available at other airports.

This is a great scheme that needs more publicity and is great to help our children in these challenging environments.

2020 Family Conference

Just to let everyone know that we have started the planning for our next conference. Save the date 24-26th July 2020 in Rome. It will be in the same fantastic Marriott hotel as the last time, for those who were there.

If you have any ideas of what you would like to see included in the conference please let us know.

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....