All posts related to "patient"

May is ankylosing spondylitis month! A Q&A session with Michael Mallinson

May is ankylosing spondylitis month and to celebrate, we would like to share this question and answer session Arthritis Consumer Experts did with Michael Mallinson, President of the Canadian Spondylitis Association.

Picture of Michael - President of Canadian Ankylosing Spondylitis Association

Q: Hi, Michael. Can you tell us about your organization?
A: The Canadian Spondylitis Association is a nonprofit national patient association formed in April 2006 to support and to advocate for those suffering from ankylosing spondylitis and associated spondyloarthritis diseases including psoriatic arthritis, enteropathic arthritis and reactive arthritis. Our goal is to be the leader in Canada providing support, education and advocacy for the spondyloarthritis patient community

Q: What are some misconceptions about ankylosing spondylitis?
A: Most people are unaware that AS strikes young people. The typical age of onset is between 17 and 35. Although people are aware that arthritis is a women’s disease, they are surprised when they found out AS has a significantly higher prevalence among men.
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Patient experiences of rheumatoid arthritis models of care: An international survey

As part of an international network of RA patient organizations, Arthritis Consumer Experts invites you to participate in a global survey of RA patients to examine the diagnosis, treatment and care they receive for their RA. The goal of this survey is to understand, from the patient experience and perspective, how current “models of care” for rheumatoid arthritis compare between countries.

Global RA Network Survey BannerYour experience and perspective matter

As a person living with RA, sharing your experiences about the care you receive is vitally important. With your help, we can meet the study goals and develop education and information programs to improve patients’ understanding about RA models of care to enable the best treatment outcomes possible in Canada.

How you can participate

If you agree to participate, you will be asked to answer a survey questionnaire, which should take approximately 10 minutes to complete. All the information gathered during the survey will be combined to protect your privacy and anonymity.

To be eligible to participate in this survey, you must:

  • Be 18 years of age or older
  • Receive health care in Canada
  • Have access to the internet

Thank you for considering our request to participate in this survey. Your participation will help you and other people living with RA in your country know more about the health care they should be receiving.

Please click here to complete the survey.

#CRArthritis Speaker’s Corner – Interviews on patient advocacy

Each of us has the power to change arthritis—together, we can change the way arthritis is perceived by the public, portrayed in the media, and understood by government. As people with arthritis, and their family members and friends, the arthritis community is in a unique position to provide media, government, and healthcare decision-makers with the real story of arthritis.

But none of us can do this alone. One or two voices may be easy to ignore, but speaking together we are powerful. The voice of arthritis—the voices of all of the people who live with the disease, or care about someone who does—is strong and getting stronger every day.

Please take the time to view the interviews below on patient advocacy and learn what passionate people and patient organizations are doing to promote arthritis awareness. Learn the facts about arthritis, and about the discrimination that people with arthritis face every day. Think about your own story, or the story of someone you love. When you’re ready, join with us and take action.

Challenge the misperceptions. Speak up. Tell your story. Change arthritis.

The interviews below are conducted as part of the “CRA Interview Series 2017 – Facebook Live #CRArthritis Speaker’s Corner” event at the CRA Annual Scientific Meeting & AHPA Annual Meeting in Ottawa earlier this month.  Continue reading

Demande de rétroaction de patients sur le biosimilaire étanercept (Sandoz) dans le traitement de la PR, de la SA et de la PJI

Stick man holding megaphoneSouffrez-vous de polyarthrite rhumatoïde, de spondylarthrite ankylosante et de polyarthrite juvénile idiopathique ou prodiguez-vous des soins à quelqu’un qui en souffre ? Vos commentaires seraient précieux.

Santé Canada définit le biosimilaire (parfois appelé produit biologique ultérieur ou PBU) comme un médicament biologique qui présente une similarité établie avec un médicament innovateur (tel que Enbrel®) et qui a fait son entrée sur le marché après l’innovateur auquel il se réfère.

Contrairement aux médicaments plus communs à petites molécules, les médicaments biologiques présentent généralement une complexité moléculaire élevée et sont sensibles aux modifications dans les pratiques de fabrication. Les biosimilaires ne sont pas identiques à leurs produits innovateurs parce que leurs caractéristiques chimiques ne peuvent être copiées avec précision pendant le processus de fabrication. Par conséquent, les biosimilaires possèdent des profils uniques en matière d’efficacité, d’immunogénicité et d’innocuité qui diffèrent de leurs produits innovateurs respectifs.
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Demande de rétroaction de patient sur le traitement de la polyarthrite rhumatoïde

Megaphone GraphicSouffrez-vous de polyarthrite rhumatoïde ou prodiguez-vous des soins à quelqu’un qui en souffre ? Vos commentaires seraient précieux.

Le Programme commun d’évaluation des médicaments (PCEM) accueille actuellement les commentaires et suggestions des patients et des fournisseurs de soins sur la présentation par le fabricant du sarilumab pour le traitement de la polyarthrite rhumatoïde (PR).

Le PCEM fait partie de l’Agence canadienne des médicaments et des technologies de la santé. Le PCEM examine avec objectivité et rigueur l’efficacité et la rentabilité des médicaments et fournit des recommandations aux régimes d’assurance-médicaments publics du Canada (à l’exception du Québec) quant à leur inscription sur la liste des médicaments assurés.

Afin de l’aider dans son processus de recommandation, le PCEM accepte la rétroaction de groupe de patients comme le comité ACE (Arthritis Consumer Experts). C’est dans cette optique que nous désirons recueillir vos commentaires pour communication au PCEM.

Voici l’information que recherche le PCEM dans ce dossier particulier : Continue reading

ACE launches JointHealth™ Education

North America’s first on-line classroom designed to educate, empower and graduate today’s modern arthritis patient

Arthritis Consumer Experts (ACE) today announced the launch of its newest on-line patient education program: JointHealth™ Education. Designed to enable arthritis patients to progress from being a “student” of arthritis to full-fledged “graduate,” JointHealth™ Education empowers and equips them to be equal partners on their health care team. As part of the launch, ACE is introducing the first course in the program – JointHealth™ Education: Rheumatoid Arthritis (RA) – to help patients and their healthcare providers better understand each other’s motivations and goals for the patient’s overall treatment and care plan.

JointHealth™ Education was inspired by many of ACE’s members living with an inflammatory arthritis who have told us they lack the communications expertise to have full, satisfying conversations with their rheumatologists on topics such as treatment options during their clinical visits. The program is informed by our organization’s participation on a global advisory panel that conducted a survey in 16 countries of rheumatoid arthritis patients and their health care providers. The results illuminate the discord between the needs, concerns and fears of patients compared to the views of their health care providers,” said Cheryl Koehn, Founder and President of Arthritis Consumer Experts and a member of the RA Narrative Global Advisory Panel.

Key findings of the RA Narrative Global Patient Survey included: Continue reading