TREAT-NMD Conference

Vancouver, Canada - June 2022

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Programme

Wednesday 7th December 2022

6pm – 8.30pm: Early Registration & exhibition

Thursday 8th December 2022

8am: Registration

8.45am: Welcome

SESSION ONE: Patient engagement 

9am: Established groups, speaker TBA

9.10am: Emerging groups, Terry Pirovolakis, founder of CureSPG50

9.30am: Emerging Groups, Nathan Peck, founder and CEO of Cure VCP Disease Inc

9.50am: Emerging Groups, speaker TBA

10.10am: Panel discussion & questions

10.30am: Refreshments & posters

SESSION TWO: Clinical trial considerations in ultra-rare patient groups

11.00am: Patient Advovacy, Jennifer Siedman, Director of Family Engagement for Courageous Parents Network (CPN)

11.20am:  Industry Perspective, Tristen Moors, Vice President, Clinical Operations at Prothelia Incorporated

11.40am: Patient identification, Chris Weihl

12.00pm: Panel discussion & questions

12.20pm: Symposia 1 – Sarepta

12.40pm: Symposia 2 – Roche

12.55pm: Symposia 3 – Ultragenyx

13.10pm: Lunch & posters

SESSION THREE: Global Neuromuscular Care and Access to Treatment

14.10pm: Family/patient advocate: Treatment access in emerging markets, Vanina Sanchez, mother of Joaquín, who suffers from Spinal Muscular Atrophy type II

14.30pm: The clinician’s perspective: Providing guidance and care in an era of commercially available treatment(s), but with limited access, Edoardo Malfatti, Centre de Référence de Maladies Neuromusculaires

14.50pm: Industry perspective, speaker TBC

15.10pm: Rolling our treatments globally, Nicole Mittman, Chief Scientist and Vice-President of Evidence Standards, CADTH

15.30pm: Panel discussion & questions

15.50pm: Refreshments & posters

SESSION FOUR: Living with NMD: practical considerations and QOL

16.20pm: Nutrition & weight loss, Zoe Davidson, Advanced Accredited Practising Dietitian specialising in paediatric nutrition

16.40pm: Exercise, Gita Ramdharry, Consultant Allied Health Professional in Neuromuscular Diseases at the Queen Square/ MRC Centre for Neuromuscular Diseases, National Hospital for Neurology and Neurosurgery, UCLH

17.00pm: Respiratory considerations, Robert Graham, Pediatric critical care physician & Senior Associate in Division of Critical Care Medicine, Boston Children’s Hospital

17.20pm: Panel discussion & questions

19.00pm: Networking event

19.45pm: Keynote speaker, Geralyn Miller, Senior Director,  AI for Good Research Lab

 

Friday 9th December 2022

8.30am: Welcome & refreshments

SESSION FIVE: COVID impact on Outcomes, Care & Clinical Trial Design

9.00am: Covid Sequelae, Maxwell Damian, Department of Neurology, Addenbrooke’s Hospital, Cambridge University Hospitals

9.30am: Impact of COVID on clinical trial design & outcomes, Teji Singh, Serepta

10.00am: Remote Outcomes, Meredith James, Clinical Specialist Neuromuscular Physiotherapist at the John Walton Muscular Dystrophy Research Centre at Newcastle, United Kingdom

10.20am: Psychological Impact of COVID, Lone Knudson, Clinical research, National Rehabilitation Center for Neuromuscular Diseases, Aarhus, Denmark

10.50am: Panel discussion & questions

11.10am: Refreshments & posters

SESSION SIX: Emerging Therapeutics options in NMD

11.40am: Genome Editing , Laura Sepp-Lorenizono, Chief Scientific Officer, Intellia Therapeutics

12pm: Gene Therapy, Carsten Bonnermann, Senior Investigator, Neuromuscular and Neurogenetic Disorders of Childhood Section, NINDS

12.20pm: N-of-1 therapies for patients with very rare mutations, Julia Vitarello

12.40pm: Panel discussion & questions

13.00pm: Symposia 4 – Novartis

13.15pm: Symposia 5 –TBC

13.25pm: Symposia 6 – Duchenne UK

13.35pm: Symposia 7 – PTC Bio

13.45pm:  Lunch & posters

SESSION SEVEN: Preparing for future trials and interventions

14.45pm: Newborn/neonatal screen, Pranesh Chakraborty, Medical and Laboratory Director for Newborn Screening Ontario

15.05pm: Virtual trials, Yan Yiannakou, Clinical Director of the NIHR Patient Recruitment Centre, Newcastle UK

15.25pm: Care 4 rare/obtaining a diagnosis, Kym Boycott, Professor of Pediatrics at the University of Ottawa in Canada

15.45pm: Psychological impact, speaker TBC

16.05pm: Panel discussion & questions

16.25pm Close

 

For announcements, see the TREAT-NMD Newsletter, sign up here:

Venue
Vancouver Convention Centre
1055 Canada Pl,
Vancouver,
British Columbia
V6C 0C3,
Canada

Further venue details


           

Connect and interact


To maximise your conference experience we are developing a smartphone app to help you not only find out about the conference but also make those all important  connections. More information about the app will be published soon.

  - find out how -  


 


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