Chromosome 18 Registry and Research Society Europe

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Charity details

Registered address
1 Chancellery Mews,
Bury St. Edmunds,Suffolk
IP33 3AB

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Charity number
SC040399

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The Chromosome 18 Registry and Research Society (Europe) is a European organisation set up in the UK in 2009 to cater for the specific needs of those with Chromosome 18 disorders, their parents, relatives and siblings.

Our mission is to help everyone affected by Chromosome 18 disorders to achieve their full potential, and to lead happy, healthy and productive lives.

Our website http//:www.chromosome18eur.org allows families from across Europe to register as members and so communicate with other famiies facing the same challenges every day.  We have syndrome specific closed Facebook groups so that any members of our community can find the advice they need any time of the night or day from people all round the world.

We are now organising our fifth family conference to be held in Glasgow June 22-24, 2018. 

Over a long weekend parents, siblings, grandparents, carers and affected men, women and children will laugh, learn and play together. For some families, this will be the first time they have met others with children just like their affected child. For some , especially our self advocates, it will be a chance to renew long distance friendships. For most, it will be a life changing experience.

Your help in fundraising will make that possible!

We welcome families affected by Chromosome 18 disorders from across Europe and provide translation services so that everyone gets the information they need to go home as the advocates their complex children need them to be. 

Chromosome 18 Europe is closely associated with the Chromosome 18 Registry and Research Society in San Antonio, Texas, as well as having ties to the associations throughout Europe that deal with all rare chromosome disorders (such as Unique in the UK, Valentin-APAC in France, Leona e.V. in Germany, Genetic Alliance and Eurordis).

Thank you

Bonnie McKerracher, Secretary

 

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