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    Archived pages: 188 . Archive date: 2013-08.

  • Title: Hereditary Angioedema (HAE) Canada
    Descriptive info: .. Login.. A.. community working together.. to improve the.. quality of life.. for Canadians with.. HAE.. Skip to content.. About HAE Canada.. What is HAE?.. The Future of HAE.. How You Can Help.. Become a member.. Make a difference.. The more members we have, the stronger we'll be!.. BECOME A MEMBER.. A CALL TO ACTION.. on the HAE Canada blog.. READ IT..  ...   ADD ME.. Halifax HAE Update, website volunteers needed.. June HAE Canada news.. Welcome to HAE Canada!.. Hereditary Angioedema, or HAE, is a rare, debilitating, and potentially life threatening genetic blood disorder that affects about 1 in 50,000 Canadians.. >.. map.. become a member.. HAE blog.. HAE Canada's 2012-2013 Corporate Sponsors.. Terms of Use.. Website Privacy Policy.. haecanada.. org.. Media Kit.. Contact Us..

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  • Title: Login
    Descriptive info: Username.. Password.. Remember Me.. Lost Password.. Comments are closed..

    Original link path: /login/
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  • Title: What is Hereditary Angioedema
    Descriptive info: Glossary.. Frequently Asked Questions.. Research Articles.. Useful Links.. What is Hereditary Angioedema (HAE)?.. Hereditary angioedema (HAE) is a rare blood disorder resulting from a deficiency in C1 esterase inhibitor.. It is a chronic, potentially life-threatening illness that causes episodes of swelling commonly affecting the face, throat, abdomen, and extremities.. If left untreated, an upper airway obstruction can prove fatal for hereditary angioedema patients.. HAE is a rare disorder and affects only a few hundred Canadians, approximately one in every 10,000-50,000 people.. Because it is so rare, many physicians are not familiar with the disease and, for many patients, getting a diagnosis can be a long and frustrating process.. Recognizing hereditary angioedema is also difficult because it manifests differently in each patient.. Like Multiple Sclerosis, the course of the disease is unpredictable and often changes over the lifetime of each patient.. The majority of people with hereditary angioedema have a defective gene that  ...   the intestinal wall.. Anyone who experiences even the slightest hint of throat swelling should seek immediate medical attention.. Hereditary angioedema symptoms tend to mimic other conditions such as allergies, appendicitis and ovarian cysts.. When hereditary angioedema is misdiagnosed as an allergy it is most commonly treated with steroids and epinephrine, drugs that are usually ineffective in treating a hereditary angioedema episode.. Other misdiagnoses have resulted in unnecessary exploratory surgery for patients with abdominal swelling and other hereditary angioedema patients report that their abdominal pain was wrongly diagnosed as psychosomatic.. Many hereditary angioedema patients have been accused of drug-seeking.. An accurate and timely diagnosis is often life changing for people suffering from hereditary angioedema.. Canadian patients are fortunate to have access to treatment that can dramatically improve the quality of life for even the mildest cases of hereditary angioedema.. For more information please refer to the.. Last updated: December 6, 2012 at 9:56 am..

    Original link path: /understanding/
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  • Title: The Future of Hereditary Angioedema in Canada
    Descriptive info: A Brighter Future is Within Our Reach.. For years Canadian hereditary angioedema patients have suffered in silence.. Without a proper diagnosis or adequate treatment they have been put through unnecessary surgeries, accusations of drug-seeking, hopelessness and despair.. Many have even died from hereditary angioedema attacks that could have been prevented or treated.. Today, the tides are changing for Canadian HAE patients.. Health Canada has approved a C1 esterase inhibitor treatment for hereditary angioedema and it is, slowly but surely, becoming more easily accessible to patients nationwide.. A number of new treatments are also on the horizon.. Home infusion is a reality for patients in many provinces.. Never before has so much been known about the disorder and the treatment.. And never  ...   life for all Canadian HAE patients.. For policymakers.. it means working with HAE Canada, CHAEN, and the HAE Nurses of Canada to bring the standard of care for Canadian HAE patients on par with those of other nations.. For healthcare workers.. this means creating protocols for treatment, developing training and educational materials, and working with each and every individual patient to better their current treatment.. For patients.. this means becoming a champion for your own quality of life.. Check back in the coming months for the introduction of "Learn to LIVE with HAE", an educational program that will help Canadian HAE patients become the most well-informed and well-equipped HAE patients in the world!.. Last updated: December 6, 2012 at 9:35 am..

    Original link path: /living-well/
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  • Title: How You Can Help HAE Canada - Volunteer, Fundraise, Share, Donate
    Descriptive info: Volunteer.. Fundraise.. Donate.. Research.. Share.. Click here to view our new.. Volunteer Opportunity Package.. !!.. VOLUNTEER:.. HAE Canada has a number of volunteer opportunities available.. If you are interested in volunteering please let us know by completing this.. contact form.. FUNDRAISE:.. HAE Canada is incorporated as a Not-For-Profit organization, but because of the expense and administrative burden associated with seeking charitable status, it has not sought to become a registered charity.. HAE Canada partners with the Canadian Organization For Rare Disorders (.. www.. raredisorders.. ca.. ) which is a registered charity that can issue tax receipts for donations to HAE Canada.. If you are interested in organizing an event in Canada to benefit HAE Canada click on the fundraise page to get more information.. DONATE:.. HAE Canada is working with the Canadian Organization for Rare Disorders to make online donations to HAE Canada possible,  ...   on Share Your Experience to find out more.. PARTICIPATE IN RESEARCH:.. Participating in research is a huge way in which HAE patients can directly contribute to the knowledge and understanding of hereditary angioedema.. Check back frequently to see if any new studies have been posted!.. GIVE BLOOD:.. HAE Canada is a proud partner of the Partner For Life program with Canadian Blood Services and a supporter of.. Héma-Québec.. Because HAE treatment relies on plasma derived from donated blood, without the generous donations of thousands of people, HAE treatment would not be possible.. You can make a difference by encouraging your friends and family to donate blood on behalf of HAE Canada.. Friends and family simply copy and paste our.. Partner ID: HAEC013349.. here.. and fill out the form before donating blood.. Quebec patients should visit the.. Héma-Québec's website.. to find the site closest to them..

    Original link path: /how-you-can-help/
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  • Title: Become a Member of HAE Canada
    Descriptive info: HAE Blog.. History.. Board of Directors.. Public Statements.. Become a Member.. Patient Map.. Membership Application and Agreement Form.. Becoming a member of HAE Canada is the most important thing you can do to help HAE Canada succeed! Not only does membership allow HAE Canada to be in touch with you about new research or treatment options, and to provide you with personal aid and support.. But it is critical that we know who and where patients are so we can effectively advocate for comprehensive care solutions with government.. There is no charge to join, and you will gain access to valuable information and join the growing hereditary angioedema community across the country.. There is strength in numbers and we can make a difference.. Please complete the form and become a member today!.. Français.. Title:.. Dr.. Ms.. Mr.. Name (required):.. Email (required):.. Address:.. City:.. Province:.. Postal Code:.. Gender:.. Male.. Female.. Date of Birth (D/M/Y) (required):.. Home Phone:.. Cell Phone:.. You are a:.. HAE Patient.. HAE Family Member.. :.. Healthcare Provider Treating HAE.. Healthcare Provider Not Treating HAE.. Other.. If Patient or Family please note names of family members with HAE below:.. If Healthcare Provider treating HAE please list area of practice/expertise below:.. If Healthcare Provider not treating HAE please list area of practice below:.. If Other please describe your connection to HAE:.. Do you have any volunteer or work experience (e.. g.. finance, research, health care, public relations, marketing,  ...   will be held in confidence and that HAE Canada will not use or disclose my personally identifiable information for the purposes other than those for which it was collected except with the express consent of the individual or a person duly authorized to act on that individual's behalf.. I acknowledge and accept that, as part of HAE Canada's patient advocacy role, aspects of individual HAE cases (including my own) may be discussed with my physician and other healthcare professionals for purposes of advocating on my behalf.. HAE Canada will not disclose personal information about individual HAE cases (including my own) to anyone else, for any other purpose, without my authorization, or as required by law.. If the personal information held by HAE Canada about me is incorrect, the organization will amend my records upon my request.. A copy of the HAE Canada privacy policy is available at haecanada.. I confirm I am not working for or with a pharmaceutical or insurance or other company that is or may provide services or products to HAE patients.. By submitting this form, I consent to the collection, use and disclosure of my personal information as described above.. I verify that the information on this form is correct and understand that I can withdraw my consent at any time.. Check here if you accept these terms.. OR please print out, sign and return this form to HAE Canada via fax to 416-585-3005..

    Original link path: /member/
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  • Title: Don't be an oyster! (A call to action from HAE Canada)
    Descriptive info: Don't be an oyster! (A call to action from HAE Canada).. Posted on.. July 12, 2013.. by.. bshepard.. Get action.. Seize the moment.. Man was never intended to become an oyster.. Theodore Roosevelt.. Well, we're pretty sure Teddy meant woman, too! In any case, the message is right: people are meant to be active.. In our lives, in our communities, in our causes, in our minds keeping the spirit of activism alive is important to who we are.. Do you care about raising awareness and growing a strong community? HAE Canada was started, and is currently kept  ...   can share for the betterment of the HAE community, we want to use them.. Do you work in education, finance, policy, health care, marketing, website development, media, social media, human resources? Have you ever served on a committee, a board, a task force? Are you willing to give some time to a very worthy cause? We have opportunities big and small for you to help and have fun.. So come out of your shell and sign up!.. Please click here to view our new.. This entry was posted in.. Bookmark the.. permalink.. Leave a Reply.. Cancel reply..

    Original link path: /dont-be-an-oyster-a-call-to-action-from-hae-canada/
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  • Title: Find Canadian Hereditary Angioedema Patients
    Descriptive info: Put Yourself on the map.. Find your place! And find others..

    Original link path: /about-hae-canada/find-your-place/
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  • Title: Halifax HAE Update, website volunteers needed
    Descriptive info: July 2, 2013.. Hello, HAE Canada!.. In case you didn't see this latest mini-newsletter coming straight from the office, here it is again! Also, that likely means you are not a member of HAE Canada.. If you would like to apply for membership and get the news hot off the presses, please.. click here.. for the form (version française aussi).. Have a great day!.. Halifax HAE update, website volunteers needed..

    Original link path: /halifax-hae-update-website-volunteers-needed/
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  • Title: HAE Blog | Hereditary Angioedema (HAE) Canada
    Descriptive info: Category:.. Older posts.. HAE Canada News July 12, 2013.. Read today's HAE Canada e-news bulletin!.. Posted in.. |.. Leave a comment.. Theodore Roosevelt Well, we're pretty sure Teddy meant woman, too! In any case, the message is right: people are meant to be active.. In our lives, in.. Continue reading.. Hello, HAE Canada! In case you didn't see this latest mini-newsletter coming straight from the office, here it is again! Also, that likely means you are not a member of HAE Canada.. If you would like to apply for membership.. HAE Canada newsletter.. May 30, 2013.. Hello, HAE Canada! Have you seen our latest newsletter? Click the orange link below to read up on the recent patient update evening in Ottawa and check the details of a way you can volunteer and WIN A PRIZE! HAEC.. 1 Comment.. Thank you!.. April 26, 2013.. THANK YOU, HAE CANADA VOLUNTEERS Message from HAEC President Tammy Armoogan It is National Volunteer Week.. HAE Canada wishes to thank our volunteers who generously gave of their time and talent over the past year.. Volunteers are patients, family members.. 2 Comments.. HAE Update in Halifax..  ...   We would love to see you there! Ottawa Update invite While these no-cost gatherings are targeted to HAE patients and their friends and families,.. 4 Comments.. Virtual Walk for HAE.. VIRTUALLY UNSTOPPABLE Time to hit the road, HAE Canada! May 16th is international HAE Day, and we’ve got a nationwide community fundraiser started here in Canada.. The HAE Canada Virtual Walk is both easy and versatile because you can do.. HAE Update in Saskatoon.. April 12, 2013.. This gallery contains.. 2 photos.. Hello, HAE Canada! This spring, we are running a series of HAE Updates, where attendees can receive up-to-date information about the science and treatment of hereditary angioedema (HAE).. The first one is in Saskatoon on April 29th, and information on.. More Galleries.. HAEi- Bringing International to HAE.. March 18, 2013.. Lucy.. As Canadians living with hereditary angioedema we often feel quite isolated, not only in our own communities, but internationally.. As a relatively young country with a large but spread-out population, we often hear tales from across the seas of how.. ,.. Uncategorized.. Tagged.. hae canada.. HAE Day.. HAEi.. Hereditary Angioedema.. hereditary angioedema international.. marco cicardi.. May 16th..

    Original link path: /category/research-news/
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  • Title: HAE Canada's Corporate Sponsors
    Descriptive info: Corporate Sponsors.. Funding for HAE Canada inc.. has been generously provided by unrestricted grants from:..

    Original link path: /2012-2013-corporate-sponsors/
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  • Archived pages: 188