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Conference Group

Image: Catherine Underhill

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 Commission approves 23 European Reference Networks

On 15th December the Board of Member States of ERNs voted to approve all 23 ERN proposals submitted under the first wave (the 24th proposal, submitted under the 2nd call, will be assessed early in 2017).
European Reference Networks are networks connecting expert centres in the field of rare diseases and specialised healthcare, organised across borders. This concept has been developing and maturing over the past five years and represents a major innovation in care for Europe’s 30 million rare disease patients: although pan-European structures exist in the research domain, this is the first such enterprise in the health sphere. The Networks will create governance structures for knowledge sharing and care coordination across the EU to improve access to diagnosis and treatment, as well as high-quality healthcare provision. ERNs have been organised around broad disease groups, to ensure that no patient with a rare disease is left ‘without a home’ under an ERN.
This is a major innovation for rare diseases in Europe, involving 370 hospitals and almost 1000 highly specialised units across 26 Countries (25 EU Member States + Norway).
The full list of approved ERN applications is available via the official European Commission webpage

October 2016 Newsletter

November 2016 newsletter with lots of exciting news from the conference and our amazing families.

Fundraiser Extraordinaire!

Eve Rushmer, one of our amazing Self Advocates, celebrated her birthday by doing a Skydive in aid of Chromosome 18 Europe.

 


European Commission approves 23 European Reference Networks

On 15th December the Board of Member States of ERNs voted to approve all 23 ERN proposals submitted under the first wave (the 24th proposal, submitted under the 2nd call, will be assessed early in 2017). European Reference Networks are


October 2016 Newsletter

November 2016 newsletter with lots of exciting news from the conference and our amazing families.


Fundraiser Extraordinaire!

Eve Rushmer, one of our amazing Self Advocates, celebrated her birthday by doing a Skydive in aid of Chromosome 18 Europe.


Veni, vidi, vici!

Chris and Doris travelled with their two little children from Austria to join us in Rome. This is what they thought.


Rome conference presentations

Some of the presentations from Rome are now available for download.


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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