• 0 Worldwide Afternoon Tea

    • News
    • by Administrator
    • 21-02-2018

    PLEASE SHARE.....Can you believe it’s nearly March! Just a reminder that our worldwide afternoon tea takes place on 2nd June 2018. We are extremely happy that so many of you are taking part! If you are also interested - all you have to do is hold an afternoon tea party/we will send you some of our leaflets and you can help raise awareness and money to help our children and families ❤️ Thank you for helping us to ‘make a BIG difference to little lives’ ❤️

  • 0 GenIDA, an online study for CS patient and families.

    • News
    • by Administrator
    • 04-09-2017

    GenIDA, an online study for CS patient and familiesThe GenIDA project is a cohort study for genetic diseases whereby clinical information is entered and updated by the family themselves. The aim is to collect medical data to help gaining better knowledge on the evolution of the disease over life. This is extremely useful in Cockayne syndrome research because of the low frequency of the disease and the geographical dispersion of the patients.Two online questionnaires allow providing and updating the relevant health information: a CS specific questionnaire (15 questions) and a main questionnaire (46 questions).  The data is kept anonymous and are stored on secured servers hosted in France. Anonymous summary of the data will be publicly available for families and for health care professionals. We hope that these novel and medically significant knowledge can be translated in improved healthcare and that this e-cohort will favour international clinical studies the more regular participants, the more informative will be the results. https://genida.unistra.fr/  

  • 0 Our new Patron Jayne O'Gorman

    • News
    • by Administrator
    • 16-06-2017

    We would like to introduce you all to our new Patron Jayne O'Gorman. Jayne has undertaken many different projects for charities and has raised a phenomenal amount of money. Jayne is organising a ball on 7th July at Chester Grosvenor to help Amy and Friends and she is doing her best to make people aware of Cockayne Syndrome. Jayne is Managing Director of Azurecollection.com We're so happy to have Jayne on board.

  • 0 Ella's Sponsored Mount Snowdon Climb

    • News
    • by Administrator
    • 29-05-2016

      We also have wonderful volunteers running, zip-wiring, entering Tough Mudder and our very own Ella Barden who suffers from Cockayne Syndrome climbed Snowdon with family and friends.

  • 0 Annual Scientific / Family Conference 2015

    Our annual family/medical conference took part in September - this year we added a scientific conference and doctors/specialists attended from across the world to form a cohort team working together to further advance research.        

  • 0 Team Amy and Friends completed Tough Mudder

    • News
    • by Administrator
    • 19-09-2015

      Team Amy and Friends completed Tough Mudder - you guys are amazing!


    Our 8th Annual Retreat took place 3rd - 5th October 2014


    Our 7th Annual Conference


    Our CS family gathered from all corners of the world for the Amy and Friends retreat/medical conference - The conference gave families a weekend together to share, learn and support each other. Medical specialists did talks on developments of their research into CS and families were able to get answers to many of their questions - Every one who attended had an incredible time, and the weekend was the best yet!!!


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