Lisa MacLeod, MPP (Nepean-Carleton) is bringing forward a Private Members’ Motion on October 20th, to address the funding gap for patients in exceptional circumstances through the consideration of a compassionate catastrophic care fund.
The motion reads:
“That, in the opinion of this House, the Ministry of Health and Long Term Care (MOLTC) appoints an advisory committee to review jurisdictions where a process is in place to consider lifesaving experimental and high cost healthcare treatments and otherwise exceptional circumstances for patients. The MOHLTC advisory committee should consider Australia’s Special Access Scheme; New Zealand’s Exceptional Circumstances Framework and High Cost Treatment Pool and the UK’s National Health Service’s Experimental and Unproven Treatments Policy with the view to establish a compassionate catastrophic care program in Ontario for those suffering from rare disease or whose treatments may be experimental or complimentary but are not yet covered by Ontario Health Insurance Program (OHIP)”
What you can do to help:
Canadian Organization for Rare Disorders
151 Bloor Street West, Suite 600
Toronto, Ontario M5S 1S4
T: (416) 969-7435
M: (647) 801-5176
MEDIA ALERT: Canadian Organization for Rare Disorders urges Ontario to implement Canada's first Rare Disease Strategy TORONTO, Feb. 27, 2017 /CNW/ - On International Rare Disease Day, patient representatives from the Canadian Organization for Rare Disorders (CORD) will meet with John Fraser, Parliamentary Assistant to the Minister of Health and Long-Term Care and other MPPs to share their experiences of living with rare disorders.
March 30, 2017
Sheraton Vancouver Wall Centre, 1088 Burrard Street, Vancouver, BC
Date: March 30 - 31, 2017 Location: Sheraton Vancouver Wall Centre, 1088 Burrard Street, Vancouver, BC REGISTER HERE Living Rare: With Research, Possibilities are Limitless With Patients, Anything Imaginable is Achievable! 2-Day Conference: March 30-31, 2017 OBJECTIVES Share experiences of living ... enhanced by a rare condition Connect with groups that improve rare living Create inspired and inspiring solutions within Canada’s Rare Disease Strategy Rare Disease Day 2017 UPDATED DRAFT AGENDA Through videos, testimonials, and facilitated discussions, we will provide an opportunity to get to know the people living with the rare conditions and their patient groups or organizations. Each of the four panels will be organized around one of the four core pillars of Canada’s Rare Disease strategy: diagnosis, expert care, community support, and access to therapy. The fifth pillar, research, will be integral to addressing issues identified in each of the other areas. REGISTER HERE Refund Policy: Cancellations received a minimum of 15 days prior to the event will receive a refund minus an administrative fee of $15.00. This fee covers the cost of processing the registration and refund. Cancellations received after the 15-day deadline and no-shows are non-refundable.