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INFRASTRUCTURE

INFRASTRUCTURE. With Tammy Armoogan. INFRASTRUCTURE. HAE Canada – founded in September 2010 Decided that, for sustainability, it was necessary to build a firm foundation National leadership, regional strategies approach. INFRASTRUCTURE Legal Structure. Applicable Legislations

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INFRASTRUCTURE

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  1. INFRASTRUCTURE With Tammy Armoogan

  2. INFRASTRUCTURE HAE Canada – founded in September 2010 Decided that, for sustainability, it was necessary to build a firm foundation National leadership, regional strategies approach

  3. INFRASTRUCTURELegal Structure Applicable Legislations Canada Not-For-Profit Act Personal Information Protection and Electronic Documents Act (PIPEDA) Income Tax Act Labour Leglislation

  4. INFRASTRUCTURELegal Structure • For sustainability, very important that HAE Canada is compliant with all legislation requirements in a Minute Book • Articles of Incorporation • Bylaws • Minutes of Meetings • Register of Directors and Officers • Register of Members • Debt Obligation Register • HAE Canada Privacy Code • Confirmation of qualification for registration with ITA

  5. INFRASTRUCTUREPolicies and Procedure Policies Rules of how an organization works Procedures: Step-by-step sequence of activities taken by an organization to complete specific tasks in accordance with the organization’s policies

  6. INFRASTRUCTUREPolicies and Procedures Position Statements Governing Policies & Procedures Administrative Policies & Procedures Committee Terms of Reference

  7. INFRASTRUCTUREStrategic Plan Mission “To partner with patients, their physicians, and the HAE community to ensure all HAE patients have access to a timely, individual, and comprehensive treatment plan to secure a full and healthy life.”  Vision “Comprehensive care for all: To be a community where HAE patients, physicians, and stakeholders in the Canadian health care system partner to bring every HAE patient access to a timely, individual and comprehensive treatment plan to ensure they lead a full and healthy life.”

  8. INFRASTRUCTUREStrategic Plan Brand A brandis “a set of perceptions and images that represent a company, product or service. While many people refer to a brand as a logo, tag line or audio jingle, a brand is actually much larger. A brand is the essence or promise of what will be delivered or experienced” (Persuasive Brands, 2012) Culture Culture is the personality and spirit of an organization. It is what makes an organization unique. Culture lets people know your values. It captures the essence of who the organization is and how it operates.

  9. INFRASTRUCTUREStrategic Plan The Culture of HAE Canada “HAE Canada will represent new hope and vision for Canadian HAE patients. Our approach will be positive, focusing on overcoming adversity, breaking out of confines, and working for, and with, the next generation, striving for/achieving a better quality of life for everyone.”

  10. INFRASTRUCTUREStrategic Plan • Strengths • Solid foundation • Members passionate about patient support, great support from CHAEN, pharma, HAEI, other HAE patient groups • Great team – Board representation across Canada, executive director in place since June 2012 • Weaknesses • Some of original weaknesses have been overcome (i.e. difficulty in contacting patients – now have website and regional events) • As a Board, being spread out across country is more difficult – electronic media very important for us

  11. INFRASTRUCTUREStrategic Plan • Opportunities • Unprecedented interest in HAE • Social media • Edmonton: Northern Alberta Bleeding Disorders Clinic – model for comprehensive care of HAE patients • Threats • As patients, our initial lack of understanding of system and how best to manage our care • Need to increase funding sources (i.e. fundraising initiatives)

  12. HAE Canada’s Strategic Plan Step 1 Step 2 Step 3 Step 4

  13. INFRASTRUCTUREFunding Currently funding is coming solely from the generous support of our pharmaceutical companies Future – plan for fundraising initiatives – national fundraising walk on HAE day (May)

  14. INFRASTRUCTUREHuman Resources • Board • President and Founder: Della Cogar • Vice President: Tammy Armoogan • Director at Large: Heather James • CHAEN rep: Dr. Stephen Betschel • HAE Nurses of Canada rep: Caroline Farmer, RN • Regional Directors: • Scottie Sanford – BC/AB • Jacquie Badiou – SK/MB • Martine Paquette – QC • Tammy Armoogan – ON • Anne Rowe - Atlantic

  15. INFRASTRUCTUREHuman Resources • Staff • Executive Director: Peter Waite • Project Manager: Renée Knapp • Volunteers

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