ONLINE FAMILY CONFERENCE
Saturday 25th April 2020
Keynote Speaker
Dr Stephanie Cherqui, University of California, San Diego
Session 1: Cystinosis and its management
13:00 – 14:00 (CEST)
Welcome & Introductions
13:00 – 13:10
Anne Marie O’Dowd
Chair of Cystinosis Network Europe and Global Cystinosis Community Advisory Board
Cystinosis and its management
13:10 – 13:30
Prof Elena Levtchenko – Conference Scientific Chair
Head of Department of Paediatric Nephrology, University Hospitals Leuven Belgium
Cystagon and Procysbi – How they work, why they are important and potential new treatments
13:30 – 13:50
Prof Donald Cairns
Head of School of Pharmacy and Life Sciences, Robert Gordon University Aberdeen
13:50 – 14:00 Break
Session 2
14:00 – 15:00 (CEST)
Working with schools – a shared language for cystinsois
14:00 – 14:20
Dr Joyce Senior
Educational Psychologist; Asst Professor of Education and Director, Professional Doctorate in Educational Psychology, University College Dublin
Maintaining your Mental Health
14:25 – 14:40
Dr Siobhán MacHale
Consultant Liaison Psychiatrist, Dept of PsychiatryBeaumont Hospital, Senior Lecturer RCSI, Dublin
14:45 – 15:00 Break
Session 3: The Eyes
15:00 – 16:00 (CEST)
The Eyes in Cystinosis
15:00 – 15:20
Rachel Bishop, MD, MPH
Staff Ophthalmologist (contractor), National Eye Institute, National Institutes of Health, Bethesda, Maryland, U.S.A.
A possible new method of delivering cystamine to the eyes in cystinosis
15:25 – 15:45
Prof Anuj Chauhan
Department Head of Chemical and Biological Engineering, Colorado School of Mines
15:50 – 16:00 Break
Session 4: Muscles and Bones
16:00 – 17:00 (CEST)
Muscle and Bone issues – treatments and latest research
16:00 – 16:20
Professor Justine Bacchetta MD, PhD
Professor of Pediatrics, CHU de Lyon HCL – GH Est-Hôpital Femme Mère Enfant, Lyon, France
Specialist in pediatric nephrology and pediatric diseases of calcium and phosphate metabolism
Benefit of exercise, exercises to do at home & new research on Galileo training boards for cystinosis
16:25 – 16:45
Christian Köppl
Physiotherapist at the Centre of Social Paediatrics in Traunstein, Germany
16:50 – 17:00 Break
Session 5
17:00 – 18:00 (CEST)
Kidney Transplant: Planning, Procuring and Preservation
17:00 – 17:30
Prof Paul Grimm
Professor of Pediatrics; Medical Director, Pediatric Kidney Transplant Program; Dept of Pediatric Nephrology Lucile Packard Children’s Hospital; Stanford University School of Medicine
Pregnancy for Women with Cystinosis
17:30 – 17:45
Dr Aude Servais
Adult Nephrologist, Necker Hospital, Paris
Male Fertility in Cystinosis
17:45 – 18:00
Dr Ahmed Reda
KU Leuven, Belgium
18:00 – 18:15 Break
Session 6: Latest research in cystinosis
18:15 – 19:45 (CEST)
Overview of the Latest Research
18:15 – 18:30
Dr Patrick Harrison
Department of Physiology, University College Cork
Keynote Address:
Clinical Trial for Autologous Transplantation of Gene-Corrected Hematopoietic Stem Cells for Cystinosis
18:30 – 19:00
Dr Stephanie Cherqui
Associate Professor in Department of Pediatrics, Division of Genetics, University of California San Diego
The Discovery and Development of CF10 – a cysteamine prodrug to improve the lives of those with cystinosis
19:00 – 19:15
Prof Herbie Newell
Professor of Drug Development at the University of Sunderland and Emeritus Professor of Cancer Therapeutics at Newcastle University, England
A No Nonsense Approach to Cystinosis: a new treatment potential
19:15 – 19:30
Prof Paul Goodyer
Professor of Pediatrics and Human Genetics, McGill University Health Centre, Montreal
A Novel Urine Test to Track Kidney Injury and Transplant Rejection
19:30 – 19:45
Prof Minnie Sarwal
Professor in Residence, Surgery, Medicine, Pediatrics, UC San Francisco (UCSF); Medical Director, Kidney Pancreas Transplant Program, Director, Precision Transplant Medicine
19:45 – 20:00 Break
Session 7: The Expert Panel
Open Q & A with our speakers from today and joined by Dr Katharina Hohenfellner, Germany and Dr Atif Awan, Dublin
20:00 – 21:00 (CEST)
Cystinosis Ireland is the proud host of the Virtual Cystinosis Conference 2020. Without funding and donations this conference could never take place.
We would like to thank all our supporters.
