HAE Planning Retreat January 29 30 2016 January

HAE Planning Retreat January 29– 30, 2016 January 25, 2016 V 4

Purpose of Presentation ¡Review retreat objectives, agenda and process ¡Explain nature of sponsor/partner presentations ¡Set context for youth outreach event ¡Highlight plans for Board Meeting and AGM ¡Review key elements of Strategic Plan 2014– 2019 ¡Take stock of progress and identify evolving challenges and opportunities ¡Focus discussion on strategic directions and priorities 2

Retreat Agenda, Day 1 Friday, January 29 ¡ 08: 00—Introduction and briefing ¡ 08: 30—Sponsor and partner presentations ¡ 12: 30—Working lunch; debrief on presentations ¡ 13: 30—Board business meeting ¡ 16: 00—Dinner (independent) ¡ 18: 00—AGM ¡ 19: 00—HAEC youth outreach event ¡ 21: 00—Close of day 3

Retreat Agenda, Day 2 Saturday, January 30 ¡ 09: 00—Review of session agenda and process ¡ 09: 30—Review of Strategic Plan commitments and progress ¡ 10: 30—Identification and assessment of key challenges and opportunities ¡ 12: 00—Working lunch ¡ 13: 30—Facilitated discussion of strategic directions and priorities ¡ 16: 00—Wrap up and agreement on next steps ¡ 16: 30—Close of session 4

Guest Presentations ¡Guests ¡APIQ ¡CSL Behring ¡Bio. Cryst Pharmaceuticals ¡Shire Pharma ULC ¡Purpose ¡Hear views and plans of relevance to HAEC ¡Provide context for subsequent HAEC planning ¡Process ¡HAEC in listening mode; questions for clarification only ¡No formal responses or commitments on either side ¡Opportunity for debriefing over lunch 5

Board Business Meeting ¡Review and approval of minutes from last Board meeting ¡Review of follow-up action on past decision items ¡Identification and discussion of new business ¡Agreement on items for next Board Meeting, and immediate next steps 6

Annual General Meeting ¡Adoption of Minutes from 2013 AGM ¡President’s Report ¡Treasurer’s Report, including ¡Audited statements 2013/2014, 2014/2015 ¡Auditor’s reports 2013/2014, 2014/2015 ¡Appointment of Auditors for 2015/2016 ¡Amendment of Bylaws ¡Nominations Report, including approval of Directors 7

Youth Outreach Event ¡Expert Guest Dr. Paul Keith ¡Mc. Master University, Department of Medicine, Faculty of Health Sciences ¡President, Canadian Society of Allergy and Clinical Immunology ¡Discussion of issues related to youth with HAE ¡Ideas for future youth outreach efforts 8

Facilitated Planning Session ¡Objectives and scope ¡Review Strategic Plan commitments ¡Take stock of progress ¡Review emerging challenges and opportunities ¡Map out strategic directions and priorities ¡Process ¡Facilitated by J. Phillip Nicholson ¡Full participation of Board and Staff ¡Agreement on implications for Staff and Board follow up ¡Feeds into updated/refined Strategic Plan with rolling horizon 9

J. Phillip Nicholson ¡Multidisciplinary background ¡ Social and Physical Geography (Carleton); Economics and Politics (Oxford); Planning (M. I. T. ) ¡Public Policy Consultant ¡ More than 30 years’ experience with 250 clients in public, private and voluntary sectors, spanning health, social, economic, environmental and general governance issues ¡ Lead advisor and author of more than 120 Memoranda to Cabinet on major federal policy and program initiatives ¡ Strategic planning support to numerous domestic and international organizations, including a range of Boards ¡ Well more than 300 health policy, strategy and program development assignments addressing prevention, research, treatment and support, and related determinants 10

APIQ ¡Association des patients immunodéficients du Québec ¡Represents people with Primary Immunodeficiency (PID) and HAE in Québec ¡Primarily focused on PID ¡Holds annual patient update in Québec ¡HAEC currently working on a Memorandum of Understanding (MOU) with APIQ ¡Could include financial support and fundraising opportunities 11

CSL Behring ¡Long-standing sponsor ¡Feeling pressured by Shire, the newcomer to the Canadian HAE scene ¡Decreased funding last year; likely to do so again ¡Involved in HAE Algorithm project ¡Interested in market research moving forward 12

Bio. Cryst Pharmaceuticals ¡HAE Canada’s newest sponsor ¡No approved drugs yet ¡Developing an oral treatment (was fast tracked in Japan) ¡Limited sponsor, but interested in helping HAEC ¡Appears to have close ties with CSL Behring ¡Licence agreement for influenza ¡Lynne Powell, Chief Commercial officer, formerly of CSL Behring 13

Shire Pharma ULC ¡HAE Canada’s largest sponsor ¡Renewed focus on HAE and rare disease to increase their profitability ¡Recent acquisition of Dyax ¡Previously acquired Viropharma ¡Helped HAEC develop resources ¡App, tearsheet, infographic, others 14

Facilitated Board & Staff Planning Session Saturday, January 30, 2016

Session Agenda/Approach ¡Review Strategic Plan commitments and related concepts and assumptions ¡Take stock of progress and related factors ¡Acknowledge “victories” and other areas of good progress ¡Address outstanding issues as well as emerging challenges and opportunities ¡Discuss and agree on adjusted and/or new strategic directions and priorities 16

What do we strive for? Vision Optimum health and well-being for those living with HAE and other related angioedema in Canada. Mission HAE Canada is committed to creating awareness about HAE and other related angioedema, to speed diagnosis of patients to enable them to become champions for their own quality of life. 17

Target Audiences ¡Those with Angioedema symptoms due to HAE or acquired HAE and HAE with normal C 1 inhibitor ¡Their families and friends ¡Their health care providers ¡Their community ¡Other health care providers who may encounter HAE ¡Government and regulatory bodies ¡Strategic Partners (APIQ, CBS, CORD, HAEi, etc. ) 18

343 Members across Canada North 3 M: 3 P: 1 NP: 2 BC 50 P: 33 NP: 17 AB 61 P: 41 NP: 20 Members: 343 • Patients (P): 233 • Non-Patients (NP): 110 SK/MB 44 P: 31 NP: 13 ON 122 P: 75 NP: 47 QC 25 P: 20 NP: 5 Atlantic 38 P: 32 NP: 6 19

Values ¡Advocacy ¡Respect ¡Collaboration ¡Stewardship ¡Learning 20

Mission-Related Goals 1. Organizational Effectiveness 2. Building the Community 3. Equipping Patients and Health Care Providers 4. Advocacy 21

1. Organizational Effectiveness § Strategic Plan § Members’ Kit § Volunteer Development Program § Communications Plan § Board Development Program § Social Media Strategy 22

2. Building the Community § Forge relationships with new partners § Develop and disseminate information, tools and resources for community members 23

3. Equipping Patients and Health Care Providers § § § Patient Updates Learn to Live Modules Newsletter Membership Forum Website Resources 24

4. Advocacy § § Advocacy Committee Collaboration with research institutions Media Strategy Work with health care providers to achieve high standards of care 25

Progress and Success ¡Organizational Effectiveness ¡Office accommodation and set up ¡HAEC Strategic Plan ¡Operational efficiencies ¡Volunteer development program ¡Leveraging of expert support (pro bono publico) ¡Building the Community ¡Medic Alert partnership ¡Global Genes―special access program documents ¡Increased member engagement ¡Membership growth―now 343 nationwide 26

Progress and Success (cont’d) ¡Equipping patients ¡Eight regional awareness and outreach events ¡HAE Radio ¡Webcast ¡Membership kit ¡Website ¡Advocacy ¡Letters to provinces on drug issue ¡Submission to Canadian Agency for Drugs and Technologies in Health (CADTH) ¡Submission and advocacy with Institut national d’excellence en santé et en services sociaux (INESS) 27

Challenges and Opportunities ¡Clarity and coordination of roles and responsibilities, including priority setting ¡Board ¡Executive Committee ¡Other Committees ¡Staff ¡Communication ¡Internal (Board to Board; Board to Staff) ¡External (Board and Staff to Partners and Sponsors) ¡Responsiveness and accountability to Sponsors 28

Challenges. . . (cont’d) ¡HAEC Website ¡ Ownership of domains ¡Accountability ¡ Deadlines and project management ¡ Expectations and demands on Committees, Staff and Volunteers ¡“Mandate Growth” vs “Mission Creep” ¡ Project approval process ¡ Scope and nature of manageable projects ¡Board Support ¡ Adequacy/timeliness of Staff-delivered info, tools and support 29

Looking ahead… ¡Aspirational goals for HAEC: ¡Security of funding ¡Strength and range of partnerships ¡Capacity to grow and deliver ¡Profile in domestic and international communities ¡Strategic alliances/complementarity of effort ¡Other 30

Questions for Discussion ¡How significant is each issue for HAEC? ¡What are HAE’s interests and priorities? ¡How should each issue be handled? ¡What are the implications for HAEC’s plans and operations? ¡What are the immediate next steps? 31