2nd. european conference. Glut 1. deficiency. programme. 22nd/23rd June Crowne Plaza Felbridge

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Bertha Douglas
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1 2nd 22nd/23rd June 2018 Ld Road, East Grinstead, RH19 2BH, United Kingdom

2nd spsorship GENERAL INFORMATION Organisers 2nd Cference Venue Ld Road East Grinstead West Sussex RH19 2BH, UK X www.cpfelbridgehotel.co.

For more details please visit: www.matthewsfriends.org/glut1uk/eurocf Ctact: Julie Fountain / julie@matthewsfriends.

2 2nd spsorship GENERAL INFORMATION Organisers 2nd Cference Venue Ld Road East Grinstead West Sussex RH19 2BH, UK X Matthew s Friends St Piers Lane Lingfield Surrey RH7 6PW, UK The venue hotel has preferential rates for delegates. For more details please visit: Ctact: Julie Fountain / julie@matthewsfriends.org / glut1uk@matthewsfriends.org X glut1uk/eurocf/ [ 0044 (0) Registrati Open THURSDAY 21ST JUNE: 4.00pm 8.00pm & FRIDAY 22ND JUNE FROM: 8.00am 02

2nd spsorship 2nd spsorship Welcome and Overview from the Scientific Advisory Board Following from the First European Cference GLUT1 Deficiency that was held in Milan in 2016, we ctinue with our

Topics that will be included are: Registrati Fees To book visit www.matthewsfriends.org/glut1uk/eurocf Full Participant Registrati 250 2 days including social event Friday evening.

Ketogenic Dietary Therapy Global Csensus Statement 4. Cardiovascular Lg Term Observatial Study 5. Movement Disorder in D 6.

Questi and Answer Sessis with expert panels.

This meeting will bring together D families in an envirment of support and understanding as well as giving healthcare professials the chance to network and collaborate further with colleagues future

3 2nd spsorship 2nd spsorship Welcome and Overview from the Scientific Advisory Board Following from the First European Cference GLUT1 Deficiency that was held in Milan in 2016, we ctinue with our biennial developmental of s to increase knowledge and awareness of this specific rare disease by bringing together experts in the field. Topics that will be included are: Registrati Fees To book visit Full Participant Registrati days including social event Friday evening. All affiliated health care professials, ie. Dietitians, Doctors, Nurses, Researchers etc. 1. Basic Science and Current Research 2. Latest Trials 3. Ketogenic Dietary Therapy Global Csensus Statement 4. Cardiovascular Lg Term Observatial Study 5. Movement Disorder in D 6. Workshops: Infants and Paediatrics, Puberty and Adults, Movement Disorder, Triheptanoin and Decanoic Acid (C10) trials. 7. Transiti and Adult Glut1D Sessi 8. Questi and Answer Sessis with expert panels. Healthcare professials and D families are welcome to attend to learn more the latest research and treatment optis that are currently available as well as those being developed for the future. This meeting will bring together D families in an envirment of support and understanding as well as giving healthcare professials the chance to network and collaborate further with colleagues future projects. We look forward to welcoming you to the UK for our Secd European GLUT 1D Cference. Day Registrati day ly attendance Friday or Saturday excluding social event. All affiliated health care professials, ie. Dietitians, Doctors, Nurses, Researchers etc. Relatives of Patient Registrati 1 day, Friday or Saturday, excluding social event days including social event Friday evening. 80 ChairmAn Scientific Committee Professor Helen Cross OBE Patient Registrati 2 days including social event Friday evening. Social Event Fee 35 Friday evening Free Rates are in GBP Sterling. Fees for all participants include: Participati in scientific sessis Entrance to the exhibiti area Printed and other printed materials from the Certificate of Attendance & HCP CPD Lunches and refreshments as detailed in the Exclusis: Hotel accommodati is NOT included in the registratis fees. Visit the booking website for hotel optis. Professor Stephane Auvin Professor Jörg Klepper All Presentatis will be cducted in English Professor Pierangelo Veggiotti 03 04

4 2nd spsorship 2nd spsorship FRIDAY 22 ND JUNE 2018 SATURDAY 23 RD JUNE am 9:00am WELCOME Joerg Klepper (Germany) and Emma Williams (UK) KEYNOTE LECTURE - NOVEL TREATMENT OPTIONS FOR GLUT 1D TBC SESSION I: RESEARCH & CLINICAL TRIALS CHAIR: HELEN CROSS (UK) 9:45am 10:15am 10:45am 11:15am 11:45am 12:15pm 12:45pm 1:00pm BASIC SCIENCE AND RESEARCH OVERVIEW Stephane Auvin, France C7 14Y EXPERIENCE +UX007 EPILEPSY TBC UX007 PED TBC COFFEE NIH C7 STUDY TBC DECANOIC ACID (C10) STUDY H. Cross, UK QUESTIONS AND ANSWERS WITH PANEL LUNCH SESSION 2: RESEARCH & CLINICAL TRIALS JOERG KLEPPER (GERMANY) 2:00pm 2:30pm 3:00pm 3:30pm 4:00pm 4:30pm 5:00pm 5:30pm THE 2018 KETOGENIC DIETARY THERAPY REVISED GLOBAL CONSENSUS STATEMENT. WHAT DOES THIS MEAN FOR GLUT 1? Eric Kossoff, USA CARDIOVASCULAR B KETOGENIC DIET IN GLUT 1D? LONG TERM OBSERVATIONAL STUDY TBC MOVEMENT DISORDER IN GLUT 1 TBC TEA INCIDENCE OF GLUT 1D IN SCOTLAND & VARIABLE PHENOTYPES TBC GLUT 1D IN SCANDINAVIA TBC QUESTION AND ANSWER SESSION WITH PANEL CLOSE FOR THE DAY ASK THE EXPERTS WORKSHOP SESSION Delegates to choose at time of booking which e to attend: 9:00-10:00am 10:00-11:00am 11:00am SESSION 3: TRANSITION AND ADULT GLUT 1D CHAIR: STEPHANE AUVIN 11:30am 12:00pm 12:30pm 1:00pm 2:00pm 2:30pm 3:00pm 3:30pm 4:00pm 4:15pm A. KETOGENIC DIETARY THERAPIES - INFANTS AND PAEDIATRICS Professor Eric Kossoff, USA C. MOVEMENT DISORDER IN GLUT 1D PAEDIATRICS Professor Joerg Klepper Professor Stephane Auvin, Professor Pierre Angelo Veggiotti COFFEE ADULT GLUT 1D CURRENT KNOWLEDGE TBC ADULT KD CLINIC US EXPERIENCE Mackenzie Cervenka, USA ADULT GLUT 1D ITALIAN EXPERIENCE Pierangelo Veggiotti, IT LUNCH ADULT KD CLINIC EXPERIENCE IN OSLO TBC SURVIVING PUBERTY AND THE THINGS WE DON T WANT TO TALK ABOUT! TBC QUESTION AND ANSWER SESSION WITH PANEL GLUT 1 SUPPORT GROUPS AND GLUT 1 FEDERATION Massimiliano Bare, Italy & Emma Williams, UK Invitatis for brief overview from European representatives SUMMARY AND CLOSING REMARKS Helen Cross, UK INVITATION TO PARIS 2020 Stephane Auvin, France B. KETOGENIC DIETARY THERAPIES PUBERTY AND ADULTS Associate Professor Mackenzie Cervenka, USA Sue Wood RD, UK D. TRIHEPTANOIN AND DECANOIC ACID (C10) Professor Helen Cross, 7:00pm SOCIAL EVENING AND BUFFET (GRAND BALLROOM) 4:30pm CLOSE OF MEETING RCPCH CPD PENDING THIS PROGRAMME IS SUBJECT TO CHANGE. RCPCH CPD PENDING THIS PROGRAMME IS SUBJECT TO CHANGE

5 2nd 22nd/23rd June 2018 Ld Road, East Grinstead, RH19 2BH, United Kingdom

3 rd International Multidisciplinary Paediatric & Neonatal Acute and Critical Care Research School

3 rd International Multidisciplinary Paediatric & Neonatal Acute and Critical Care Research School DATE: 26-27 October 2017, VENUE: Aula Salviati 1-3, Bambino Gesù Children's Hospital (BGCH), Rome, Italy