Fragile X Society Conferences
Our family and professionals conferences provide the opportunity for families to learn about particular aspects of fragile X and the latest research findings, as well as giving them time to meet and share their experiences with each other and the professionals.
Conferences are free to family members of the Society.
For associate members the fee is £45 per person, and for non-members the fee is £50 per person.
The Fragile X Society's National Family Conference and AGM on Saturday 21st September 2013
at The Holiday Inn, Birmingham City Centre
Once again we managed to organise a varied programme for this special day, and, as is usually the case, all the speakers received very positive comments on our feedback forms. We were also told by many delegates how friendly the atmosphere was on the day. The speakers were:
- Dr Andy Stanfield (The Patrick Wild Centre, Edinburgh) : Current research and future developments
- Corrie McLean (fpa) : Relationships and sex issues for those with learning disabilities and fragile X
- Professor Kim Cornish (Monash University, Australia) : Latest female premutation research and implications
In addition we had our ever popular "Family Story" : "Being a sibling"; this type of insight is always very well received by our delegates and this time it was no exception.
If you wish to view the full programme then it can be found on
The Fragile X Society's Scottish Family Conference on
18th May 2013
This year our Scottish Family Conference was held on Saturday 18th May at the usual venue, the Stirling management Centre at the University of Stirling in Scotland.
The programme was quite varied, with Dr Andrew Stanfield (The Patrick Wild Centre) giving details of current and future reseach developments; and Corrie McLean from fpa, the family planning association, talking about relationship and sex issues.
In the afternoon there were discussion/workshop sessions, as these are very popular with our families.
All in all, it was a very good conference for all..... if the very positive ffedback we received from the delegates is anything to go by. If you would like further details then a report on this conference can be found on pages 20 to 23 of our family newsletter number 69 (June to July 2013) .
in March 2013
We were delighted when this year we were able to hold an additional Family Conference in London on Sunday 3rd March 2013; and doubly deligted that the speakers at this conference were the highly regarded Professor Jeremy Turk and Dr Gaia Scerif, who are both known to and loved by our families due to their vast experience of working with fragile X families.
By early February the conference was fully booked such that all subsequent applicants had to be put on a long waiting list....
If you are interested, a report of this conference can be found on pages 3 to 5 of our family newsletter number 69 (June to July 2013).
Family Support Group Meetings
Regular family support group meetings for parents and carers of children and adults with fragile X are held in various venues in England and Scotland. These are usually arranged by family members, and of these, the meetings most closely located to the fragile X office which is in Great Dunmow are held in Chelmsford, Essex.
Unfortunately the Chelmsford meeting can be attended by adults only, as the venue is not suitable for children. If you would like to, and are able to attend, we will be pleased to welcome you. For details of these and the other meetings at other locations please Contact Us to obtain more information.
Fragile X Fundraising Activities
Without the generosity of our families and supporters the Fragile X Society could not have developed into the organisation it is today. From the six founding members in 1990 our membership has grown to around 1500 families, all receiving support and information as they need it. A significant factor in maintaining that support is the need to generate ongoing income.
The Fragile X Society is the only organisation in the UK specifically offering support to fragile X families. Every penny raised for the Society will be used to continue that support and extend it to meet the changing needs of our families, to raise awareness and to support valid research.
Our current fundraising activities range from members organising sponsored events, to our friends and members holding Tea Parties, or joining our 100 Club, or selling tickets for our annual lottery.