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HAE Canada Bringing HAE patients together to learn and share.

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Presentation on theme: "HAE Canada Bringing HAE patients together to learn and share."— Presentation transcript:

1 HAE Canada Bringing HAE patients together to learn and share

2 Our Sponsors

3 What is HAE Canada HAE Canada is a patient advocacy group that represents people suffering from Hereditary Angioedema and other Angioedema. We are a grassroots operation, that relies on support from our members to achieve our goals.

4 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.

5 Organizational Effectiveness -Strategic Plan -Members’ Kit -Volunteer Development Program -Communications plan -Board development program -Social media strategy

6 Building the Community -Forge Relationships with new partners -Develop and disseminate information, tools and resources for community members.

7 Equipping Patients & Health Care Providers -Patient Updates -Learn to Live modules -Newsletter -Membership Forum -Website Resources

8 Advocacy -Advocacy Committee -Collaboration with research institutions -Media Strategy -Work with health care providers to achieve high standards of care.

9 HAE Canada currently has 241 members. Atlantic M: 27 P: 24 NP: 3 QC M: 18 P: 13 NP: 5 ON M: 81 P: 53 NP: 28 SK/MB M: 35 P: 23 NP: 12 BC M: 35 P: 25 NP: 10 AB M: 42 P: 29 NP: 13 Total Canada Total Members (M): 241 Total Patients (P): 168 Total Non-Patients (NP): 73 North M: 3 P: 1 NP: 2

10 Our Partners  Association des Patients Immunodéficients du Québec (APIQ)  Canadian Hereditary Angioedema Network (CHAEN)  Canadian Organization for Rare Blood Disorders (CORD)  National Rare Blood Disorder Organization (NRBDO)  Hereditary Angioedema International (HAEi)

11 Stakeholders  Members – currently we have 241!  Financial sponsors – CSL Behring and Shire  Canadian Blood Services  Health Canada  Provincial Health Ministries

12 Recent Achievements HAE Updates in Toronto, Calgary, Saskatoon, Surrey, Ingersoll. Upcoming Ottawa, Toronto, Edmonton, Calgary. New Executive Director and Office Administrator and office in Ottawa. Updated Website. Developed a 5 year strategic plan. Provided input to the Common Drug Review at CADTH for Firazyr (Icatibant).

13 Recent Achievements  Provided input into the Drug Review for Firazyr (Icatibant) in the Provinces of Quebec, BC, and Ontario.  Provided our voice in support of a pan Canadian access framework for therapies for rare diseases. A letter was sent to each of the Provincial Health Ministers.

14 Our History HAE Canada was officially formed in September 2010. Its roots, however, can be traced back a number of years.  2002 – CHAES (Canadian Hereditary Angioedema Society) the predecessor to HAE Canada was formed through the hard work of Dr. Tom Bowen and Jeanne Burnham, the mother of two children with hereditary angioedema.  2003 – CHAES, with funding from CSL Behring, hosted a conference in Toronto which resulted in two key outcomes for HAE patients:  An international consensus algorithm for the diagnosis, therapy and management of hereditary angioedema; and  The formation of the Network of Rare Blood Disorder Organization (NRBDO).  2006 – The NRBDO, led by the Canadian Hemophilia Society (CHS) and with funding from the Public Health Agency of Canada, sponsored a Conference on Comprehensive Care for Rare Blood Disorders. Consensus was reached on the components of comprehensive care for rare blood disorders and that the NRBDO, collectively and its member groups, individually, would work towards the establishment of comprehensive care clinics and the development of national data base registries for rare blood disorders.

15 Our History  2007 – After the dissolution of CHAES, a group of physicians formed the Canadian Hereditary Angioedema Network (CHAEN) in the fall of 2007 with the first meeting held in conjunction with the Canadian Society of Allergy and Clinical Immunology (CSACI) annual meeting.  2010 – In May, CHAEN hosted a meeting in Toronto, where an international consensus was formed on the diagnosis and treatment of hereditary angioedema. Henrik Boysen, Executive Director for HAE International, approached the Canadian patients present about starting a Canadian hereditary patient group. In September a small patient group led by Della Cogar was formed under the name HAE Canada.  2011 – Driven from the vision of Dr. Tom Bowen and inspired by the success of Dr. Bruce Ritchie, HAE Canada worked on “Building a Strong Foundation”, the first stage in its five-year strategic plan. With the “Poised for Success” conference held in Winnipeg in November and the launch of the HAE Canada website, the second stage of the strategic plan, “Building HAE Canada’s Community” began.

16 “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.” - HAE Canada Founder Della Cogar

17 Contact Us 1081 Carling Ave, Suite #408 Ottawa, Ontario, K1Y 4G2 Tel: 613-761-8008

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