International Conference nd May

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Rubinstein-Taybi Syndrome Support Group International Conference 20-22 nd May 2016 www.rtsuk.org

General Information Message from Chair I am delighted to invite you to the first ever British-organised International Rubinstein-Taybi Syndrome conference which will be held from May 20th to May 22nd 2016 at the Hilton Metropole Birmingham. The event is designed for the RTS community, their family and carers and health professionals. It will include aspects of the condition and updates on RTS research, as well as discussions about dealing with RTS from different perspectives. We hope that this meeting will also bring together people living with RTS to share their experiences. We are proud to welcome Professor Raoul CM Hennekam MD PhD, Professor of Pediatrics and Translational Genetics as our keynote speaker. Also supporting the conference are: Dr Adam Shaw MD FRCP, consultant in Clinical Genetics, Professor Christopher Oliver BSc, MPhil, PhD, CPsychol, Professor of Neurodevelopmental Disorders and other medical professionals who are noted for their expertise in a particular area. The venue is located close to motorways and Birmingham international airport and a shuttle is available from the airports and train station. The hotel also features a health club, pool and spa. I hope that you will join us for what promises to be a stimulating and educational event and I look forward to welcoming you in Birmingham. Best regards, Siobhan Lund RTS Support Group Chair

General Information The information given in this Conference Information Booklet gives an outline of the weekend programme. Information will be updated on the RTS Support Group website regularly. A final Conference Programme will be available nearer the Conference date and will give full and final details. Date: Fri 20 th Sun, 22 nd May 2016 Venue: Hotel website: Important Note: Hilton Metropole Birmingham National Exhibition Centre Birmingham B40 1PP http://www3.hilton.com/en/hotels/unitedkingdom/hilton-birmingham-metropole-bhxmetw/index.html Please do not book any rooms direct with the hotel or online. The conference is priced as a package and will include your hotel room. Full details are given under Booking your Conference Package. Check in: Friday, 20 th May from 15.00 Saturday, 21 st May from 08.30 Check out: Accessibility: Sunday, 22 nd May before 12 noon The RTS Support Group are holding fully accessible rooms for families requiring these facilities. The swimming pool is fitted with a hoist. RTS Contact: Maxine Aldred: maxinealdred@hotmail.co.uk 0116 2597281 Siobhan Lund: Siobhan.lund@hotmail.co.uk Dawn Elliker: dawnelliker@gmail.com

Outline Programme We are awaiting final information and confirmation of speakers. The RTS Support Group website will be updated regularly as and when information is confirmed. Fri, 20 th May: 15.00 - check in opens 18.00 Welcome and evening dinner Sat, 21 st May: 09.00 Conference opens 09.30 Welcome from RTS Support Group Chair A special welcome from RTS friends 09.45 Keynote Speaker: Professor Raoul CM Hennekam MD PhD, Professor of Pediatrics 10.45 Refreshments 11.15 Dr Adam Shaw ME FRCP 12.00 Professor Chris Oliver BSc, MPhil, PhD, CPsychol 12.30 Q & A Session 13.00 Break for lunch

Outline Programme cont d 14.00 Seminars covering the following will run between 14.00 and 16.00 a) Genetics b) Challenging behaviour pertaining to RTS and strategies to deal with them. c) Keloid scarring in RTS d) Diet and compulsive eating strategy e) RTS and Autism f) Everyday fundamental needs ie toilet training g) Communication in RTS h) Ophthalmology and RTS 16.00 Free time 18.00 Evening dinner followed by evening entertainment Note: 1-2-1 clinic appointments will be available for booking. These will run from 14.00. Sun, 22 nd May 08.30 Welcome 09.00 Workshops (outlined above) will run throughout the morning 1-2-1 clinic appointments will be available for booking. 12.30 Goodbye and thank you to all. 13.00 Lunch and close of conference

Other Activities Our Siblings: Support for our siblings is just as important as for our RTS individuals. Sibling support activities will be available during Saturday and Sunday. They will have the opportunity to relax and have fun. Play area and crèche: Crèche facilities will be available to allow families to attend the seminars during Saturday and Sunday. There will also be a supervised play area. Families must ensure that all children in this area are accompanied by a responsible adult. This area will not be a closed crèche area. The full activity programme will be published in the final programme.

Your Conference Package and Cost The RTS Support Group will be heavily discounting the cost of the Conference Package to support families with RTS individuals. Your package will include: Bed & Breakfast 20 th and 21 st May 2016 Evening meal 20 th and 21 st May 2016 Lunch 21 st and 22 nd May 2016 Refreshments at breaks 21 st and 22 nd May 2016 All activities shown in the final programme will be included in your package. The RTS Support Group will not be responsible for any travel costs, although Guaranteed Events may be able to assist with bookings for overseas visitors with flights and transfers. Cost: Per Adult 80 for the full Conference Package RTS Individual No charge Per Child 4-12 20 per child for full Conference Child up to 4 No charge The RTS Support Group package above will cover parents, RTS individuals, siblings, carers, grandparents and this will be classed as immediate family. Other extended family members will be agreed at the discretion of the RTS Support Group committee. If you are not sure, please contact Maxine Aldred, RTS Support Group via email: Maxinealdred@hotmail.com. Conference Cancellation Policy: Cancellation more than 60 days before the event: 100% refund Cancellation less than 60 days and more than 30 days before the event: 80% refund Cancellation less than 30 days before the event, no refund Cancellation must be in writing. The effective date is the date of dispatch.

How to book for the RTS International Conference To book your place at the Conference, you must book through our event management company, Guaranteed Events (a Division of Bridge Overseas Ltd). Telephone: From the UK: Freephone 08000 346 246 From outside the UK: 00 44 1656 747 700 Lines will be open 09.15 17.15 Mon Fri 09.15 13.15 Sat (except UK bank holidays). Email: jw@bridgeoverseas.co.uk Payment: Deposit upon booking: 20 per adult 10 per child Full & final payment must be made 8 weeks before the Conference start date. NOTE There will be a 2% booking charge if paying by CREDIT CARD. There will be no charge when paying by debit card. You will be able to pay by cheque and details will be given upon booking. Contact Details for any queries regarding the Conference: RTS Contact: Maxine Aldred: maxinealdred@hotmail.co.uk 0116 2597281 Siobhan Lund: Siobhan.lund@hotmail.co.uk Dawn Elliker: dawnelliker@gmail.com