Our Sponsors 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 ID: 918901
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Slide1
HAE Canada
Bringing HAE patients together to learn and share
Slide2Our Sponsors
Slide3What 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.
Slide4What 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.
Slide5Organizational Effectiveness
Strategic Plan
Members’ Kit
Volunteer Development Program
Communications plan
Board development program
Social media strategy
Slide6Building the Community
Forge Relationships with new partners
Develop and disseminate information, tools and resources for community members.
Slide7Equipping Patients & Health Care Providers
Patient Updates
Learn to Live modules
Newsletter
Membership Forum
Website Resources
Slide8Advocacy
Advocacy Committee
Collaboration with research institutions
Media Strategy
Work with health care providers to achieve high standards of care.
Slide9HAE 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
Slide10Our 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
)
Slide11Stakeholders
Members – currently
we
have
241!
Financial
sponsors – CSL Behring and Shire
Canadian Blood Services
Health
Canada
Provincial Health Ministries
Slide12Recent 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).
Slide13Recent 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.
Slide14Our 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.
Slide15Our 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
.
Slide16“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
Slide17Contact Us
1081 Carling Ave, Suite #408
Ottawa, Ontario, K1Y 4G2
Tel: 613-761-8008
info@HAECanada.org
www.HAECanada.org