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.
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; firstname.lastname@example.org
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.