March 29, 2016
Innomar's Journey to Support Rare Disease
Innomar Joins CORD at Queens Park
On February 29th, Innomar joined the Canadian Organization for Rare Disorders (CORD) at the Legislative Assembly of Ontario to support action on Canada’s Rare Disease Strategy in the province. Canada’s Rare Disease Strategy is focused on building an effective and efficient federal plan for treatment of rare disorders in Canada. Its five-point plan includes, improving early detection and prevention; providing timely, equitable and evidence-informed care; enhancing community support; providing sustainable access to promising therapies; and promoting innovative research.
Ontario Health Minister Eric Hoskins announced his commitment to develop an approach to a coordinated provincial healthcare system for patients with rare disorders. Innomar was proud to support such an event that will inspire leadership and commitment among other provinces.
To learn more about Canada’s Rare Disease Strategy, visit: www.raredisorders.ca/canadas-rare-disease-strategy
Innomar Cares for Rare!
For International Rare Disease Day, Innomar’s Rare Disease Committee organized several company-wide activities in support of the patients and families we assist every day through our rare disease patient support programs.
Our committee coordinated many events throughout our offices in Oakville, Burlington and Montreal, including:
- A competitive chili cook-off
- Jeans Day donation
- Cupcake bake sale
- 50/50 draw
- Jelly Bean Guessing Jar
- Patient journey videos
- Compiling “Fascinating Facts” about rare disorders
These activities were met with great enthusiasm and appreciation by our employees. We are proud to have raised over $2,350, with all proceeds being donated to CORD! Thank you to all our employees for their generous donations and commitment to patients and families we support living with rare disease.
Patients and families dealing with a rare disease face extraordinary challenges and often live many years with undiagnosed diseases. There are more than 7,000 rare conditions affecting nearly 3 million Canadians, half of whom are children. Many are life-threatening or debilitating. Despite tremendous progress in recent years, more than 80% have no known treatment. Since each disease affects small numbers, most do not attract large research contributions. (Source: www.raredisorders.ca)
Rare Disease Day Conference 2016
Innomar went on the road to Ottawa in sponsorship of CORD’s Rare Disease Day Conference on March 9th and 10th. This pivotal event brought together multiple stakeholders from the rare disease community to begin the implementation of Canada’s Rare Disease Strategy.
The conference reviewed learning from across Canada on the proposed Rare Disease Strategy; reflected on current best practices in policy, research and clinical expertise and supportive care; and heard from patients about the proposed Rare Disease Strategy. CORD also announced the launch of Rare Alliance Canada, which will:
- build on existing expertise, resources, infrastructure, and action; and
- provide direction and a blueprint for a world-class national system for all Canadians affected by rare diseases.
- The conference ended with a trip to Parliament Hill to provide a face and a voice during the Question Period discussion at the House of Commons.
Watch the statement made here: www.raredisorders.ca/cord-statement-in-the-house-of-commons-on-march-10-2016/