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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.


Chromosome 18 Europe Conference 24-26 July 2020 “Living with Chromosome 18”

We are heading back to Rome

Conference Group

Dear members and friends. 

We are planning some changes to the way we structure our Conference. We will look at potential topics and speakers across the lifespan that takes us from babies to adults, to maximise the information parents and carers can take away with them.  

We plan to separate some of the schedule into topics relevant to affected people across the following age groups: 0-5, 6-11, 12-16 and 17+ 

We will still be offering some of our favourite and most useful sessions: The Sibs programme and panel, the Self-Advocates panel, an update from Jannine and Dan and the Registry, the European Research, Syndrome break outs, Grandparent breakouts and more. There will of course still be the world class créche, wonderful food from our generous hosts at the Marriott, and plenty of time to meet new friends and old in the shadow of the fantastic city of Rome.

New for this year, we will be structuring some sessions with the help of Dr Viziello Cà Grande, who has been working with the Italian families and Agèmo as part of the Rare Disease Clinic in Milan. 

An impressive and evolving programme, Agèmo pays a researcher from the clinic who has been collecting data from the Italian families for the last four years. They also offer a check-up at their annual Italian conference and bespoke medical advice. Sarah Russotti, who has kindly taken charge of conference this year, is sure, and we agree, that we have much to take away from the impressive flow of information that has been established. Stand by for some very interesting presentations.

As always with our member-led, member-run organisation, we need something from you in order to help your small Management committee, as we head towards Conference:

  1. Ideas for topics you are interested in learning about and in what age group?
  1. Suggestions for speakers and contacts for them – we commit to covering airfare, accommodation and meals but as a charity it is wonderful not to have to pay a fee.

  1. An idea of which of you might be coming Friday morning so we can plan our agenda correctly.
  1. Volunteers for the Conference Working Group.  As discussed at the AGM, we realise people feel unable to give up their time to join the Management Committee, so we have formed working groups. We really need some people to help us between now and July

  1. Our charity relies on us being able to rotate around the membership for Management Committee members, when lives get too busy for those who have volunteered. We have room for more and will welcome anyone with open arms who can help with the load.

We are all committed to doing the best we can for our Chromosome 18 Europe, but as always, we need your help. As you realise, these conferences don’t happen by magic and we all know how much you enjoy them.  Thank you for listening and we are looking forward to hearing from you.

Please contact Jennifer Morrison ch18eurmembership@gmail.com who will put you in touch with the relevant MC member.

See you in July!

Love from 

Richard, Paul, Sarah, Bonnie, Maxine, Greg, Steve, Na’ama, Jade and Sara.

Chromosome 18 Europe 6th BiAnnual Conference 24th-26th July 2020 (Booking Info)

LATEST INFORMATION

We are delighted to open the ROOM BOOKING CODES for the 6th Chromosome 18 Europe Family Conference in the Rome Marriott Park Hotel, Rome, Italy 24/26 July 2020

The conference will start on the Friday and Crèche and Sibs4Sibs registration forms will come out at the same time as Conference registration forms.

But first you need to book your rooms for the reserved block.

Go to the website www.romemarriottpark.it and enter the code into the  Special Rate section ——> Group Code  using the following codes

Room for 1 or 2 people:     CROCROC

Room for 3 people:             CH9CH9D

Room for 4 people:          CH8CH8D

Should you have any questions or need assistance with your hotel reservations please contact Valentina Balzano: valentina.balzano@marriotthotels.com or on 00390665882771

Please see below for a draft schedule.

As always, we welcome any suggestions and help that you have to offer.

The schedule this year will work across Syndrome Groups but also have some options for Age Groups to make sure you come away with some solid information for your baby/child/teen/young adult.

Friday am

Families arrive, Welcome Desk and Créche registration.

LUNCH together in the hotel

Friday pm

Official Welcome from the CH18 Europe Management Committee and guide to Conference Weekend. Agenda for AGM and discussion of member needs.

Syndrome Breakout sessions

DINNER together in the hotel – Sitting with your Syndrome Groups

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Saturday am

Presentations by Dr Jannine Cody and Dr Dan Hale

Chromosome 18 Europe Research Report by Prof Richard Davison

LUNCH together in the hotel – Sitting in Country and Language Groupings

Saturday pm

Main session Dr. Viziello Cà Granda Milano – Italian Study and presentation on the Age appropriate afternoon sessions

Age Breakout sessions

FREE TIME BEFORE SATURDAY EVENING DINNER AND DISCO

DINNER together in the hotel – Sitting in Age Groups

DISCO TIME

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Sunday am

AGM

Self-Advocates Panel (for adults affected by CH18 disorders)

Siblings Panel

LUNCH together in the hotel – Sitting with friends new and old

Sunday pm

Parents Panel

Conference Concludes

See you in 2022!

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.