All posts related to "ACE"

Le Réseau PR mondial lance son site Web

Le comité ACE (Arthritis Consumer Experts) dirige la création du premier réseau mondial regroupant les organisations de patients atteints de PR.
Global RA Network Banner
Le comité ACE a collaboré à la création du premier réseau mondial regroupant les organisations de patients atteints de polyarthrite rhumatoïde. Fondé en 2016 par des organisations de patients souffrant de PR et des leaders de 18 pays, le Réseau PR mondial tisse des relations internationales, identifie des initiatives et des objectifs communs et travaille à les réaliser afin d’améliorer la qualité de vie des personnes atteintes de PR partout dans le monde.

Le Réseau PR mondial lance aujourd’hui son propre site Web : http://globalranetwork.org/. Ce site constitue, pour les personnes atteintes de PR, les fournisseurs de soins et les gouvernements, un point de rencontre en ligne de même qu’une plateforme d’échanges sur le travail en cours et les ressources en matière d’information et d’éducation.

La première initiative du Réseau PR mondial aura été de mener à bien une enquête auprès de patients quant à leur propre expérience des modèles de soins de la PR. Les conclusions de cette enquête seront présentées au cours de la prochaine rencontre scientifique annuelle de l’American College of Rheumatology, qui se tiendra le 5 novembre 2017.

À la lumière des constats de l’enquête, le Réseau PR mondial élaborera des programmes d’information et d’éducation qui comprendront également des initiatives de défense du dossier de la PR susceptibles d’améliorer la perception des patients du type et de la qualité des soins qu’ils devraient recevoir et permettre ainsi, à tous les pays membres, d’obtenir les meilleurs résultats de traitement possibles.

Arthritis community leaders launch new patient portal to improve patient care in BC

Arthritis community leaders launch new patient portal to improve patient care in BC

ArthritisBC+Me Portal helps BC patients learn about arthritis programs and resources

ArthritisBC+Me Portal banner for arthritis in bc

 

A group of BC’s leading arthritis specialists, researchers and patient groups are pleased to announce the launch of the ArthritisBC+Me portal designed to help BC patients learn about arthritis and local programs best suited to their needs. The first of its kind in Canada, the portal represents the commitment of the community partners – Arthritis Consumer Experts, Arthritis Research Canada, Mary Pack Arthritis Program, The Arthritis Society and the BC Society of Rheumatologists – to making arthritis information and services more accessible to the estimated 1 in 5 British Columbians who are living with arthritis.
Continue reading

ACE launches first of three new blogs to help you “power up” your arthritis knowledge

ACE launches first of three new blogs to help you “power up” your arthritis knowledge, get more connected to the community, and learn the latest about health policy and politics affecting our group of chronic diseases. 

As Canada’s largest national patient-led organization and provider of evidence-based information and education programming, ACE is always looking for better ways to “power up” Canadians living with arthritis.

As always, we want to know what you think. We encourage you to share feedback and offer topics of interest for future blog posts.

We hope you had a great Arthritis Awareness Month in Canada!

Team ACE


Image of a smile in article about oral health and arthritisIs your mouth a gateway to getting arthritis? 

When Health Canada’s Canadian Institutes of Health Research was created in 1994, I, like many, was puzzled that they included oral health along with musculoskeletal health in the research pillar known as the Institute for Musculoskeletal Health and Arthritis (IMHA). After all, what do researchers trying to solve the thousands of mysteries that make up “arthritis”, a group of over 100 different diseases, have to do with teeth. But were they ever smart to do so; the latest research shows the mouth and the joints are definitely connected.

Continue reading

Cheryl Koehn: Yes, You Can – An excerpt from Innervoice.life

Innervoice.life is a website dedicated to telling the inspiring stories of athletes describing their journeys to health, discovery and personal victories. Below is an excerpt of the most recent “innervoice” story, featuring ACE President and Founder Cheryl Koehn.

Picture of Cheryl Koehn

Picture from Innervoice.life

EMOTIONALLY AND SPIRITUALLY

I no longer play competitive volleyball, or any other sport for that matter. But the inner high-performance athlete is alive and well inside of me, and helps me overcome challenges every minute of every day. Not long after I retired from competitive volleyball, I developed severe rheumatoid arthritis (RA), an autoimmune disease that leads to uncontrolled inflammation and joint swelling, immobility and eventual destruction. From the day I was diagnosed, something inside of me said “don’t stop moving, keep trying to do the things you love”. Little did I know, that perspective is what research would prove years later: high intensity exercise in the setting of moderate to severe rheumatoid arthritis is a good thing, as long as you protect your joints from improper movement or stress, or when they are actively inflamed.

I approach my life with rheumatoid arthritis the exact same way I did my competitive sporting life. Emotionally and spiritually, I can be tougher than the toughest times I face. I may not be able to do half of what I used to physically, but I have finely honed team skills that help me in the community development work I lead. I recognise that overcoming a challenge requires thoughtful planning and work, and then more work, before you can “win”. Nothing came easy for me on the volleyball court, and the same is true in life. I know that is very cliché, but clichés exist for a reason; they’re usually true!

Continue reading

Pour le souligner, le comité ACE lance une campagne sur Twitter : #ArthritisMadLibs

Au Canada, septembre est le mois de sensibilisation à l’arthrite. Pour le souligner, le comité ACE lance une campagne sur Twitter : #ArthritisMadLibs

La campagne #ArthritisMadLibs pendant le mois de sensibilisation à l’arthrite : une occasion de réécrire l’histoire du patient arthritique, un mot à la fois.

 l’arthrite
Le comité ACE (Arthritis Consumer Experts) souligne le mois de sensibilisation à l’arthrite en lançant une campagne sur Twitter : #ArthritisMadLibs. L’objectif est d’aider les autres à comprendre l’impact de l’arthrite et à prendre des décisions éclairées à propos du développement de nouveaux programmes sur l’arthrite destinés autant aux patients qu’aux fournisseurs de soins.

Mad Libs est un jeu de mots dans lequel certains mots essentiels à une phrase sont laissés en blanc pour que le joueur puisse y substituer ses propres mots. Comme nous en apprenons toujours grâce aux sondages réalisés chez les patients arthritiques à travers le monde, la communication est un élément essentiel de la relation entre les patients et leurs médecins, rhumatologues, infirmières, pharmaciens, amis, collègues et chercheurs. La campagne #ArthritisMadLibs est l’occasion de réécrire l’histoire du patient arthritique – un mot à la fois.

Pendant le mois de sensibilisation à l’arthrite, le comité ACE publiera quotidiennement sur Twitter des micromessages de jeu Mad Libs sur 5 thèmes différents : les patients, le travail, la famille et les amis, les soins de santé et les animaux. Pour y participer, suivez le mot-clic #ArthritisMadLibs sur notre compte Twitter @ACEJointHealth. Si vous n’avez pas de compte Twitter, mais que vous désirez tout de même participer au jeu, suivez notre fil Twitter sur le site Web (www.jointhealth.org) et faites parvenir vos réponses par courriel à feedback@jointhealth.org. Pour alimenter la campagne, aimez, retweetez et répondez sur Twitter. Le Réseau de diffusion sur l’arthrite (www.arthritisbroadcastnetwork.org) offrira chaque semaine un résumé Mad Libs !

Arthritis Awareness Month in Canada: Arthritis Consumer Experts’ #ArthritisMadLibs Twitter Campaign

#ArthritisMadLibs is a chance to re-write the arthritis patient story during Arthritis Awareness Month – one word at a time.

word cloud of arthritis words for #ArthritisMadLibsArthritis Consumer Experts (ACE) is celebrating Arthritis Awareness Month with the #ArthritisMadLibs Twitter Campaign. The goal is to help others understand the impact of arthritis and make informed decisions about the development of new arthritis programs that will benefit patients and their caregivers.

Mad Libs is a word game where key words in a sentence are left intentionally blank for others to substitute with their own words. As we continue to learn from the global arthritis patient surveys, communications is critical between patients and their doctors, rheumatologists, nurses, pharmacists, friends, colleagues and researchers. #ArthritisMadLibs is a chance to re-write the arthritis patient story – one word at a time.

During Arthritis Awareness Month, ACE will be tweeting daily with 5 themed Mad Libs. The themes are patients, work, family and friends, healthcare professionals, and animals. To participate, please follow hashtag #ArthritisMadLibs on our Twitter account @ACEJointHealth. If you do not have a Twitter account but would like to participate, you can follow our Twitter feed on the Arthritis Consumer Experts website (www.jointhealth.org) and email your answers to feedback@jointhealth.org. To drive the campaign, please like, retweet, and reply on Twitter. Arthritis Broadcast Network will be providing a weekly summary of the Mad Libs.