• 0 Upcoming Events

    • Events
    • by Administrator
    • 10-09-2018

    26th August 2018 - Take@That Take@That - a fun filled evening of brilliant entertainment on 26th October 2018 at The Poulton Vics Social Club, Mill Lane, Wallasey CH44 5SW - 7.30 until late - tickets £10! Bingo - join us for an evening of laughter - with fab prizes! Eryrys Church Hall, Eryrys, Near Mold CH7 4DE - bingo books £5 - bring your own alcohol or soft drinks! Christmas party - fun for all with Santa at Ewloe Social Club, Mold Toad, Ewloe, Deedside CH5 3AU - 12-5pm - fun, games, buffet - free for all Amy and Friends families and volunteers.  

  • 0 Ben Hughes has been awarded the Princess Diana Award.

    • News
    • by Administrator
    • 10-09-2018

    Ben Hughes has been awarded the Princess Diana award for his outstanding contributions towards raising awareness and fundraising for Amy and Friends.  

  • 0 ANNUAL SCIENTIFIC / FAMILY CONFERENCE 2018

    Amy and Friends 11th annual conference took place at Carden Park Hotel, Cheshire.  Families came together from far and wide across the world to share love, laughter, tears and valuable time making memories.

  • 0 Amy and Friends - in conjunction with Guy’s and St Thomas’ Hospital and NHS England

    • News
    • by Administrator
    • 10-09-2018

    Amy and Friends -  in conjunction with Guy’s and St Thomas’ Hospital and NHS England are beginning work in establishing a multidisciplinary clinic for children and young people who suffer from Cockayne Syndrome/TTD.  We have worked so hard over the last 7 years and are delighted with this outcome!

  • 0 White Water Rafting Event

    • News
    • by Administrator
    • 10-09-2018

    A group of wonderful crazy people are taking part in a white water rafting event in October to raise funds!  Good luck everyone! 

  • 0 Lily Mae's Family Fun Day in aid of Amy and Friends.

    • Events
    • by Administrator
    • 28-07-2018

      Lily Mae's Family Fun Day in aid of Amy and Friends. Our Fun Day is Sunday 19th Aug 2018 from 12pm - 5:30pm Up Holland Labour ClubOrmskirk RoadSkelmersdaleLancashireWN8 9AR We have a Fun Fair, Fun House, Giant Inflatables, Pony Rides, Live Singers, Dancer Troupes, Various Stalls, Live DJ, Auction and raffles with some amazing prizes.

  • 0 The People's Projects Please Vote for Amy and Friends

    • News
    • by Administrator
    • 13-04-2018

    The People's Projects gives you the chance to decide how National Lottery funding can make a difference in your local community. The projects are revealed! Voting opens at 9am on Monday 16th April 2018. A share of up to £3 million of National Lottery funding is up for grabs. With 95 organisations shortlisted across the UK, we want you to vote for the projects you would like to receive funding. Groups are competing for up to £50,000 of funding to improve the lives of people in their communities. Please Vote for Amy and Friends by clicking the image below remember voting doesn't open until 9am Monday 16th April 2018, Thankyou!

  • 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/  

 



 
 
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