An international panel of researchers came together recently to roll up their sleeves and get started on work that will have broad implications for people seeking treatments for a rare disease.

The team, led by School of Public Health Professor Dev Menon, is tasked with developing effective policies and processes to streamline decision making and ensure fair handling of treatment coverage for patients with rare diseases. Members include researchers from across Canada, as well as representatives from various levels of government, patient groups and industry. In addition, an advisory committee will play an integral role as the project unfolds. (See list of names at right.)

The purpose of the launch meeting was to plan how best to capitalize of the expertise of each team member and to set milestones for this five-year project funded with a $1.5 million team grant from the Canadian Institutes of Health Research.

“I am involved,” said Alistair Kent, director of Genetic Alliance UK, “because how we translate and use knowledge is so important to improving the quality and quantity of life for people who suffer with a rare disease.”

This research is supported by a five-year, $1.5 million team grant from the Canadian Institutes of Health Research.