Dianna Graves Board Member HAE Canada

Bob Simon Regional Director HAE Canada

About Canada

•  World’s second largest country by area

•  4,486 km from coast to coast •  Population = 36,048,521 •  10 Provinces and 3 Territories

Ø Approximately 720 HAE patients in Canada

Ø Of the ~720 HAE Canada only knows of 253

Management of HAE:

diagnosis and doctors

•  Most patients are diagnosed and treated by specialists

o Diagnosis is standard C1-1NH and Complement blood test

•  Currently no officially designated specialist center

•  Canadian Hereditary Angioedema Network

•  Regional clinics emerging as leaders in care and

research

•  Overall, patients feel fortunate to have treatment

Management of HAE:

medication and treating attacks

•  Acute Treatment:

•  Berinert

•  Firazyr

•  Long-term prophylaxis •  Cinryze

•  Home and self-administration is common

•  Funded and available via Provincial formularies and

private insurance plans

•  Rare diseases gaining traction with decision- makers and

becoming more of a priority

Management of HAE:

An emergency situation

•  HAE not well recognized

•  Treatment not always readily available

•  Emergency Room HAE Protocols in place

•  HAE Canada working with Pharma

to educate ER staff

•  Resource materials

•  HAE phone App

HAE Support

•  4 Regional Directors •  377 members •  3 to 4 patient events

each year •  Proud members of HAEi

Website www.HAECanada.org HAE Radio www.soundcloud.com/hae-radio Facebook www.facebook.com/haecanada

We are Canada wide and represent patients from every Province & Territory

Future of HAE

Our Vision:

Optimum health and well-being for those living with HAE

and other related angioedema in Canada

HAE Day :-)

May 16

ü  We wore a smile and supported 9 Canadians on the Camino

Walk

ü  Released our new HAE Radio

episode “Access to Care”

ü  Launched our Member’s Only

Forum on our website :-)

Stay in touch

Please contact us at anytime :-)

HAE Canada National Office

1081 Carling Avenue, Suite #408

Ottawa, Ontario K1Y 4G2

tel: (613) 761-8008

fax: (613) 761-5927

email: info@HAECanada.org

website: www.HAECanada.org

LinkedIn: https://www.linkedin.com/company/hae-canada

Mission:

HAE Canada is committed to creating awareness

about HAE and other angioedema, to speed

diagnosis of patients to enable them to become

champions for their own quality of life