CIHR-UK Rare Diseases Workshop

Goal

Foster increased interactions and collaboration between the UK and Canada in the rare disease research field.

Develop an understanding and build trust by sharing common views and experiences
Establish and strengthen collaboration between leading scientists and consortia
Define best practices to share resources, including information and samples

May 2 - Day 1 : 13h-17h
Grand Event Room C
Time	Name	Topic/Title
13h-13h15	Welcome Address
13h-13h15	Paul Lasko
13h15-15h30	15min talks
	Gene Discovery/Paediatric Disorders
	Kym Boycott	FORGE Canada
	Pia Ostergaard	Phenotyping and Gene Identification in Human Primary Lymphoedema
	Terry-Lynn Young	Population-based research in Newfoundland
	Bernard Brais	CIHR Rare Disease Team to Find a Cure for the Canadian Founder Ataxia: ARSACS
	Eamonn Sheridan	Consanguinity as a tool to identify novel disease genes
	Inflammation
	Raashid Luqmani	Evaluating disease states in systemic vasculitis for clinical trials and studies
	David Cabral	Childhood chronic systemic, & central nervous system, vasculitis-PedVas CIHR-RDET initiative
	Oncology
	William Foulkes	Rare Diseases
	15h30-16h	Break
16h-18h	15min talks
	Bioinformatics
	Anthony Brookes	Mutation Database Strategies: Tried, Tested, Failed, and Future
	Michael Brudno
	Mike Innes	Orphanet Canada
	In Silico Data Mining
	Wyatt Yue	Structural Genomics Consortium & Rare Diseases
	Alex McKenzie	IN SILICO MINING OF LARGE TRANSCRIPTIONAL DATABASES; UNTAPPED SOURCE OF NEW DRUG APPLICATIONS?
	Therapies
	Michel Roberge	Facilitating rare disease drug discovery
	Bill Newman	Rare disease studies in Manchester
	Chris McMaster/Karen Bedard	Orphan Diseases: Identifying Genes and Novel Therapeutics to Enhance Treatment (IGNITE)
	18h30	Networking & Dinner Grand Event Room A

May 3 - Day 2 : 8h-15h
Studio 10
Time	Name	Topic/Title
8h-9h	Breakfast
9h-10h30	Context for Collaboration
	Paul Lasko	CIHR PM Initiative and Canadian Landscape
	Kym Boycott	IRDiRC Policies and Coordination
	Alex McKenzie (chair)	Global Context
10h30-11h	Break
11h-12h30	Panel Discussion: Clinical Considerations How to better address the patients’ needs? How to translate research outcomes into benefits for the patients? Is everything in place to integrate this new knowledge?
12h30-13h30	Lunch
13h30-14h30	Panel Discussion: The Right Collaborations at the Right Time What are the current respective strengths? What resources should be shared and how to facilitate this? How can we build on existing networks? How to integrate open access approaches?
14h30-15h	Closing remarks –Paul Lasko