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Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England

Charity Registration SC047332 - The Fragile X Society Registered Charity in Scotland
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA

 

Fragile X Syndrome: Adulthood & Issues Facing Carriers

Updated: Apr 3, 2019


Jonathan Cohen (Medical Director, Fragile X Alliance Clinic), Rashelle Cohen (Neurodevelopmental Optometrist), Michael Cohen (Expert by Experience)

We were delighted to host this event, in partnership with the Patrick Wild Centre. We had a fantastic mix of families and professionals attend the event in Edinburgh, as well as people from around the world joining us for the live stream.


Topics Covered Included:

  • Fragile X Syndrome in Adulthood:

  • Issues facing men and women with Fragile X Syndrome; behaviour in adulthood; experiences of working with adults in a multidisciplinary clinic;

  • Accommodation, employment, training & independence.

  • Michael Cohen will also give a personal perspective on living with Fragile X Syndrome.

  • Fragile X Carrier Issues

  • An overview of the latest information on the clinical effects for men and women who carry the Fragile X Premutation

  • Discussion about screening

For those who could not attend- don't worry! You can catch up with the talk online. All you need to do is click on the player below. Alternatively, you can watch or download via this link.

Note: Unfortunately the final 5-10 minutes of the talk were not captured in the recording. For further information, please contact us


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