Donate 5th Annual Dublin Cystinosis Workshop 2019 - 26 & 27 April 2019

Dublin Cystinosis Workshop 2019 Scientific Agenda

Dublin Cystinosis Workshop 2019 Scientific Agenda

Friday Afternoon: 26th April 2019

Workshop Participant Registration from 1:00 pm


SESSION ONE – Basic Science and Mechanisms – Friday Afternoon
Time Speaker Topic (working titles – final titles to be confirmed) Institution Country
1:45 pm – 2:00 pm  

Welcome Address


2:00 pm – 2:30 pm Dr Olivier Govaere Cysteamine as a normal metabolite, on the enzymes that produce it and on their regulation and/or dysregulation in disease, particularly non-alcoholic fatty liver disease Newcastle University UK
3:00 pm – 3:30 pm Koenraad Veys Allogeneic HSCT transfers wild?type cystinosin to nonhematological epithelial cells in cystinosis UZ Leuven BE

3:30 pm – 4:00 pm


Comfort break

SESSION TWO – Clinical Science – Friday Afternoon
4:00 pm – 5:00 pm Dr Katharina Hohenfellner and team – Christian Koeppl and Nadine Herzig (Schoen Klinik Muenchen, Harlaching), Christine Knerr (Logopedics, SPZ, Traunstein) and Dr Dieter Haffner (Hannover Medical School Children’s Hospital) Gallileo Study and Logopedic findings in patients with Cystinosis Department for Pediatric Orthopedics and Neuro-Orthopedics, Schoen Klinik Muenchen Harlaching and Logopedics, SPZ, Traunstein and Hannover Medical School Children’s Hospital DE
5:00 pm – 5:30 pm Professor Craig Langman – The Isaac A Abt MD Professor of Kidney Diseases Effects of isradipine and Ursalic acid on Cystinosis disease Feinberg School of Medicine, Northwestern University
Head, Kidney Diseases, The Ann and Robert H Lurie Children’s Hospital of Chicago

5:30 pm – 6:00 pm


Poster session – guided poster session for patients/families


6:00 pm – 7:00 pm


Welcome Reception – mingling between families and scientists

Saturday: 27th April 2019


SESSION THREE – Therapeutics – Saturday morning
Time Speaker Topic (working titles – final titles to be confirmed) Institution Country
9:00 am – 9:30 am Emeritus Professor Herbie Newell Update on cystinosis pro-drug CF10 Newcastle University UK
9:30 am – 10:00 am Professor Paul Goodyer Update on new drug therapy for cystinosis Montreal Children’s Hospital CA
10:00 am – 10:30 am Dr Manoe Janssen Drug combinations Utrecht University NL

10:30 am – 10:50 am


Comfort break

10:50 am – 11:20 am Dr Laura Rita Rega genistein use with cysteamine IT
11:20 am – 11:50 am Speaker to be confirmed


SESSION FOUR – General Public Patient Engagement – Saturday morning
11:50 am – 12:15 pm Oral presentations by PhD students/Early stage researchers
12:15 pm – 12:30 pm Prize for best presentation
Prize for best poster
12:30 pm – 1:00 pm Poster session – guided poster session for patients/families
Extended break to allow mingling between families and scientists

12:30 pm – 2:00 pm




SESSION FIVE – Transitional Care Strategies / Social Burdens – Saturday afternoon
2:00 pm – 2:30 pm Dr Suja Somanadhan Social burden of Cystinosis disease University College Dublin IE
2:30 pm – 3:00 pm Dr Hannah Blakey Cystinosis pregnancy registry Institute of Translational Medicine (ITM), Birmingham UK
3:30 pm – 3:50 pm Patient/family speaker Family perspective Cystinosis Ireland IE

3:50 pm – 4:15 pm


Comfort break

SESSION SIX – Clinical aspects of Cystinosis – Saturday afternoon
4:15 pm – 4:45 pm Dr Brendan Keating Using these genetic data-sets to understand transplant complications and thus improve treatment for transplant patients Division of Transplantation Department of Surgery,
University of Pennsylvania,
Penn Transplant Institute
Philadelphia, PA 19104
4:45 pm – 5:15 pm Dr Ahmed Reda Azoospermia and male fertility issues in cystinosis Katholieke Universiteit BE

5:15 pm – 5:30 pm


Mr Mick Swift


Closing Remarks


Cystinosis Ireland




Workshop Gala Dinner

The 5th Annual Dublin Cystinosis Workshop 2019 is part funded by the Health Research Board.  Cystinosis Ireland gratefully acknowledge their support.

Hope will find a cure

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