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MedicAlert Partnership

By | Communiqués de presse, HAE Blog, Nouvelles | No Comments

New partnership to protect rare disorder patient group

MedicAlert Foundation Canada and HAE Canada are pleased to announce their recent collaboration. “This partnership will help our members be better equipped during an emergency by quickly conveying the information first responders need to know to help save lives,” said Jacquie Badiou, interim President of HAE Canada.

Hereditary Angioedema (HAE) is a rare and serious genetic disorder characterized by recurring painful attacks of swelling in different parts of the body and affects men, women and all ethnic groups at the same rate. The severity of the attacks can vary between patients and throughout an individual patient’s lifetime. Attacks can be painful and disfiguring and when they occur in the throat, can be life-threatening due to the risk of suffocation.

“Giving a voice to someone and protecting them when they need it most is our mission. This is why we choose to work with organizations that advocate for individuals living with rare conditions like hereditary angioedema,” shares Robert Ridge, President and CEO of MedicAlert Foundation Canada.

The nature of HAE varies greatly and symptoms of HAE may change over time. Attacks typically last between 2 and 5 days and patients can experience 1 to 3 attacks per month.

HAE Canada is a patient group that was founded in 2010 with the mission to create awareness about HAE and other related angioedema, to speed diagnosis of patients and enable them to become champions for their own quality of life. Their vision is optimum health and well-being for those living with HAE and other related angioedema in Canada. Learn more about this organization at www.HAECanada.org.

MedicAlert Foundation Canada is the largest membership-based registered charity in Canada. It is the leading provider of emergency medical information services. More than one million Canadians have been protected by their services. For over 50 years, its mission is to protect Canadians and save lives. MedicAlert is backed by robust electronic health records maintained by medically trained professionals, a state-of-the-art secure database, and that answers calls from EMS and first responder personnel in 140 languages within an average of 5 seconds, all linked to customized identification products for Canadians with medical conditions and special needs.

For information on a special offer for HAE members, please visit www.medicalert.ca/hae.

 

Nouveau partenariat ayant pour but de protéger un groupe de patients atteints d’une maladie rare

MedicAlert Fondation Canada et AOH Canada sont heureuses d’annoncer leur toute récente collaboration. « Ce partenariat vise à aider nos membres à se munir de bons outils si une urgence devait survenir, dans le but de transmettre rapidement les informations aux premiers intervenants afin de les aider à sauver des vies », a déclaré Jacquie Badiou, présidente intérimaire de l’AOH Canada.

L’angiœdème héréditaire (AOH) est une maladie génétique rare et grave qui se caractérise par des crises récurrentes d’enflure douloureuse sur différentes parties du corps. La sévérité des crises peut varier entre les patients et également varier au cours de leur vie. Les attaques peuvent être douloureuses et déformantes, et lorsqu’elles se produisent au niveau de la gorge, elles peuvent devenir très critiques en raison du risque de suffocation.

« Donner une voix à une personne et la protéger au moment où elle en a le plus besoin est notre mission. Voilà pourquoi nous choisissons de travailler avec des organisations qui appuient activement les personnes vivant avec des maladies rares telles l’ angiœdème héréditaire, » partage Robert Ridge, président et chef de la direction de MedicAlert Fondation Canada.

La nature de l’AOH varie considérablement et les symptômes peuvent changer au fil du temps. Une crise dure généralement entre 2 et 5 jours, et les patients peuvent subir 1 à 3 crises par mois.

AOH Canada est composée d’un groupe de patients et a été fondée en 2010 avec la mission de sensibiliser la population à l’AOH et autres œdèmes apparentés, de même qu’accélérer le diagnostic des patients et leur permettre de devenir les champions de leur propre qualité de vie. Leur vision est une santé optimale et le bien-être des personnes vivant avec l’AOH et autres œdèmes connexes au Canada. Pour en savoir plus sur cette organisation, visitez le www.HAECanada.org.

Fondation canadienne MedicAlert est le plus grand organisme à but non lucratif enregistré composé de membres au Canada, et s’avère être le fournisseur en services d’information médicale d’urgence pour plus d’un million de Canadiens depuis plus de 50 ans. Les services de la Fondation comprennent des dossiers de santé électroniques, une base de données sécurisée et à la fine pointe, une ligne d’urgence 24 heures pour le personnel des urgences ainsi que des produits d’identification personnalisés.

For information on a special offer for HAE members, please visit www.medicalert.ca/hae.

New Clinical Trial – BCX4161-301 (OPuS-2)

By | Communiqués de presse, HAE Blog, Non classifié(e), Nouvelles | No Comments

We are excited to tell you about some new clinical trials that will be happening in Canada. Biocryst will be overseeing several studies across the country. There is more information below. 

If you have any questions about this or anything else please don’t hesitate to contact us.

BCX4161-301 (OPuS-2) 

An oral investigational drug is being evaluated in adults with Hereditary Angioedema (HAE). The purpose of the research study is to assess whether taking the study drug prevents and/or reduces the frequency of attacks compared to placebo. Each patient will participate in a 12-week dosing period and will be asked to come to the research clinic 6 times over a 4- 6 month period. Patients will record their HAE attacks and study drug dosing in an electronic diary daily. Patients should have access to and take their on-demand treatment for acute attacks at any time as needed during the study. Additional information about the study can be found at:

https://clinicaltrials.gov/show/NCT02303626

Canada Specific Information

 

Download (PDF, 233KB)

Global Genes Toolkit

By | HAE Blog, Non classifié(e), Nouvelles | No Comments

Our partner Global Genes has been working hard at creating a comprehensive library of tools for members of the rare disease community. Their most recent piece has been a look at the special access programs available in Canada. Check out the newest addition to the Global Genes ‪#‎RAREToolkit‬ library: “Access to Unapproved Medicine: Is This An Option For Me? (Canada)” HAE Canada is a proud content partner and would love to hear your feedback!

HAE Day, Awareness and Patient Stories

By | HAE Blog, Non classifié(e), Nouvelles | No Comments

Hello HAE Canada!

We hope that you had a wonderful long weekend. It was beautiful here in Ottawa!

We had a pretty exciting week last week.  We have been working with the Howlett family to start getting their HAE story out into the world.

I must say it has been a success! Ken and Amanda have been great! They were interviewed by three different media organizations in Southern Ontario on Thursday and we would like to share the reports with you!

Rogers Daytime London Interview

104.7 Heart FM

The Woodstock Sentinel Review

If you are interested in sharing your story with HAE Canada or the media we would love to hear from you. You can contact us at info@haecanada.org

Many regards,

the HAE Canada team!

P.S. We are excited to be headed to Toronto this coming Saturday! Registration is still open so if you haven’t yet signed up we would love to see you there!

MiBerinert App

By | HAE Blog, Non classifié(e), Nouvelles | No Comments

We are pleased to announce that CSL Behring has released a mobile app designed for patients who use Berinert!

You can find more information about the MiBerinert App by following this link.

Please be advised, the MiBerinert app is intended for the use of patients who use Berinert. You will need to input the DIN number that can be found in the top left corner of the Berinert packaging.

We are excited for this opportunity to help you track your attacks!

A Busy Month

By | HAE Blog, Non classifié(e), Nouvelles | No Comments

Thats right, we’ve got a busy month coming up! There’s lots going on, and it would be a shame if you all missed it!

First off we have HAE Day on May 16! It’s going to be a day full of informative posts and community building. be sure to tune into our facebook feed and blog so that you can catch all of the updates!

The following week we will be in Toronto (May 23) for our second membership update of the year. Dr. Stephen Betschel will be speaking at this event. So send us an e-mail at jsloat@haecanada.org to get on the guest list!

After that we have a bit of  a break, but we’ll be heading out to Edmonton on June 13 to meet up with Dr. Bruce Ritchie and all of our lovely members from Northern Alberta! Once again, shoot us an email at jsloat@haecanada.org to RSVP.

After that comes an exciting summer of program development leading into our Calgary event which is planned for October 17.

Happy Spring!

To be a Caregiver

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We have been thinking about the role of caregivers over the past couple of days here in HAE Canada’s national office.

Caregivers are incredibly important members of our community, but often they can overlooked as we focus our attention on the diagnosis, treatment and overall well being of our patients. Don’t get us wrong, patients deserve all the support they can get, but thats kind of the point, those closest to them often are the ones providing their primary support.

So here is a big thank you to all the caregivers out there. We appreciate all the support that you give to your loved ones.

If you’re looking for more thoughts on the role of caregivers and the important role they play in treating chronic illnesses such as HAE please check out these links that we have curated for you.

Living well, building a healthy relationship that includes illness

The Caregiver’s Survival Guide