Media Advisory: Canadian Organization for Rare Disorders (CORD)


Should Rare Disease Patients Fear National Pharmacare?

  • Today, less than 60% of treatments for rare disorders make it into Canada
  • In Canada, 1 in 3 rare disease patients say they can’t get the drug they need through their drug plans

Will a national pharmacare program make it easier or harder for rare disease patients to get the medicines they need? On March 20th, just in advance of the Canadian Organization for Rare Disorders’ (CORD) annual Rare Disease Day Conference, dozens of patients, family members and supporters will converge on Parliament Hill to meet with the Members of Parliament to deliver one simple message, “National Pharmacare: Let’s be fair to rare.”


WHEN: Tuesday, March 20, 2018 at 9:00 am

WHERE: Charles-Lynch Press Conference Room (Room 130-S), Centre Block, Parliament Hill, Ottawa


  • Durhane Wong-Rieger, President and CEO, CORD
  • Susi Vander Wyk, Executive Director, Cure SMA Canada
  • Karen McCullagh, Cystinosis Awareness and Research Effort


For further information or to request one-on-one interviews:

Angela Covato, CORD
Tel: 416-969-7435