CHARGE Family Support Group, Family Weekend and Conference

CHARGE Family Support Group, Family Weekend and Conference


Charge Family Group
Telephone: 02476 841 018


Saturday, September 17, 2016, 10:00 AM until Saturday, September 17, 2016, 3:00 PM


The CHARGE Family Support Group (CFSG) will be holding a Family Event and Conference on Saturday 17th September 2016 with support from Jeans for Genes and Sense. This is a great opportunity to meet other families and professionals with an interest in the condition. Places are now full, but you are encouraged to register and you will be added to the waiting list. Most places are for families with a limited number available for professionals. Dr Jeremy Kirk is organising a Professional Day on Friday 16th September 2016 - places are available. 


Professional Day

This is a great opportunity to both hear from experts in the field, but also to meet and network with other healthcare professionals including scientists, clinicians, multisensory (MSI) teachers and educators, psychol-ogists who deal with this very complex condition. There will also be sessions on the practicalities of setting up a service.

The programme is being finalised but there are currently a number of national and international speakers signed up including:

  • Professor Kim Blake: Halifax, Canada (Medical advisor to Canadian CHARGE group)
  • Professor Conny van Ravenwaaij, Gronigen, Netherlands (Medical Advisor to Dutch CHARGE group)
  • Dr Albert Basson, Reader in Developmental Biology, Kings College, London
  • Dr Gail Deuce: Deaf/MSI teacher, Gail Deuce Consultancy
  • Dr Helena Gleeson, Endocronologist and Transition lead, University Hospital, Birmingham
  • Professor Jeremy Kirk, Paediatrician, Birmingham Children’s Hospital (Medical advisor to UK CHARGE group)
  • Dr Heather Murdoch: Head MSI Unit Victoria School, Birmingham

 The cost is £75 for the day which includes food and refreshments.

 The deadline for applications is Friday 2nd September

Family Event

To apply for a place, families will need to be current members of the CFSG. There is a maximum number of four adults per extended family group. This is to allow the maximum number of families to attend. There is no charge for these CFSG members to attend the conference and you only need to make one registration per family/party. There is a registration fee for professionals (£40)

The CFSG wants to make the presentations accessible to everyone who attends, so please provide full details of your communication or access needs in the form.

When you register, you will select workshops - every effort will be made to give you your first choice but due to the size of rooms this cannot be guaranteed.

There will be a photographer present throughout the conference, and we will use selected photographs in marketing materials and similar, in the future. If this causes you a problem, please speak to a member of the organising team on the day.

Alternative: There will also be the opportunity for young people with CHARGE to meet up if they are not attending the Leisure Club. This will be facilitated by the CHARGE Family Support Group however no care support will be available for this. 

Leisure Club

Sense will be supporting people with CHARGE and their siblings in a Leisure Club on the Saturday which will allow parents and carers to attend the presentations. It is a fun, supportive environment for those who attend to try new activities, games and experiences. Skilled and experienced leaders will run the Leisure Club alongside a team of volunteers. 

Sense require you to complete a Leisure Club Information Form for each person attending the Leisure Club. These will be followed up with a phone call to make sure the care, support and preferences of those attending the Leisure Club are catered for. Spaces in the Leisure Club are limited, and whilst we may still have space in the conference, we may not be able to offer the support of the Leisure Club - we will make this clear when offering your places.

Weekend: Please register once for each member of your party/family over the age of 12 who wishes to eat dinner on the evening of Saturday 17th September. Children under 12 and those with special dietary needs (e.g. tube feeding) will be free. Please register people only once for either the conference or Leisure Club.  



Places at the event will be allocated on a first come, first served basis. You will receive confirmation of your place within 2 working days of it being made. Please do not assume that you have a place until you received confirmation from Sense. 

Your registration will be cancelled and refunded if you are not a CFSG member or a professional.

Should you need to change any details from your registration, please contact the Conference and Events team on 0207 014 9305 or conference&

Travel and accommodation is to be organised by the attendee(s). Please contact the Hilton Coventry to book the rooms you require, quoting ACHAA for a special rate, available on both the Friday and Saturday night. Please note that these rooms are first come, first served, and the number we have reserved is limited so book early to avoid disappointment. We are hoping to secure a special rate for Thursday evening as well (for those attending the professional day), and will update this page accordingly

The reduced rate is:

Single bed and breakfast £70

Double bed and breakfast £80

Adjoining rooms for children aged 0-18 (two twin beds likely, please speak to hotel) £40

The number to book is 02476 841 018, where you should get through to Stephanie or Sarah; for a "family" room you need to enquire after their adjoining rooms.

If you have any questions about the event, please email conference&

When Friday, 16 September 2016 at 10:00 - Saturday, 17 September 2016 at 15:00 (BST) - Add to Calendar Where Hilton Coventry Hotel - Paradise Way, Walsgrave Triangle, CV2 2ST


Hilton Coventry Hotel
Paradise Way
Walsgrave Triangle

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