Session 1: Approaches to Developing Rare Disease Networks
Children’s National Rare Disease Institute – Marshall Summer
Session 2: Rare Gems in Canada’s Research Landscape
CIHR RD Emerging Team Grants and Contributions to Canadian Excellence, Paul Lasko, CIHR Institute of Genetics
Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay – Bernard Brais, McGill University
Developing Effective Policies for Managing Technologies for Rare Diseases – Devidas Menon, University of Alberta
Canadian Framework for Evaluation and Decision-Making for EDRD – Larry Lynd, University of British Columbia
Diagnosis to treatments – Kym Boycott, CHEO
Scleroderma Patient-centered Intervention Network – Brett Thombs, Jewish General Hospital
Achieving the “triple aim” for inborn errors of Metabolism – Pranesh Chakraborty, University of Ottawa
Session 4: Designing Rare Alliance Canada
Panel 3: Multiple Disease Networks-MYCRN – Stephen Barbazuk, BC Children’s Hospital
Panel 4: Opportunities Created-RareConnect / PhenomeCentral / MatchMaker Exchange – Michael Brudno
Session 2: How Will Pharmacare Assure Timely Access to Innovative Therapies?
What are Canadian pathways for access to innovative therapies, and how well are they working? Sandra Anderson, Innomar Strategies
What are the BIG innovative therapies happening now and in the near future? What are expectations and challenges for next generation therapies? Chander Sehgal, Innovative Medicines Canada
Debate Panel: How will a national Pharmacare program assure access to innovative therapies?
Cheryl Greenberg, University of Manitoba
Jim Whitlock, The Hospital for Sick Children
Session 3: Does Canada Need an Orphan Drug Regulatory and Access Framework?
What are incentives for industry under Health Canada’s Orphan Drug Roadmap? Cathy Parker, Health Canada
What are challenges for industry to bring rare disease drugs to Canada? Lisa Chartrand, Roche Canada
In the absence of a panCanadian “Expensive Drugs for Rare Diseases Program, are RD drugs been fairly assessed and reviewed? Suzanne McGurn, Ontario Public Drug Program
Debate Panel: How will a “made-in-Canada” Orphan Drug Regulatory and Access Framework serve all Canadians?
Session 4: Will Biosimilars Improve Access to Innovative Therapies?
Will CADTH’s proposed streamlined approach to review of biosimilars serve the needs of all stakeholders? Helen Mai, pCODR
What is the current evidence base for biosimilars use, including switching? David Zante, Janssen Canada
What is the current status of clinical use of biosimilars; globally and locally? Jennifer Chan, Merck Canada
Biosimilar policy issues: A patient advocate’s perspective Andrew Spiegel, Global Colon Cancer Association
Debate Panel: Is the Canadian healthcare system ready for biosimilars?
Panelists: Allan Miranda, Janssen; Jennifer Chan, Merck Canada; Ned Pojskic, Greenshield; Karen Voin, CLHIA; Mina Mawani, Crohn’s and Colitis Canada, Helen Mai, pCODR