Arthritis Consumer Experts

Arthritis Consumer Experts JointHealth™—a trusted source for information on arthritis, treatments, research and health policy.

May is Lupus Awareness Month in Canada, an important opportunity to raise awareness about the realities of living with l...
05/21/2026

May is Lupus Awareness Month in Canada, an important opportunity to raise awareness about the realities of living with lupus and the need for more comprehensive, patient-centred care. As part of ACE’s special Lupus Awareness Month programming, Arthritis at Home is featuring programming that elevate patient experiences and highlight important gaps in lupus care.

In this episode of Arthritis at Home, Arthritis Consumer Experts (ACE) speaks with Ms. Ellen Wang, ACE’s Programs Coordinator and PhD candidate at Arthritis Research Canada, about the important findings from Part 2 of ACE’s National Survey on Lupus in Canada. The conversation explores how lupus affects areas of life that are often overlooked in healthcare conversations, including mental health, pregnancy and family planning, relationships, intimacy, confidence, and emotional wellbeing.

Watch now: https://arthritisathome.jointhealth.org/?p=6953

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Mai marque le Mois de la sensibilisation au lupus au Canada, une opportunité importante pour sensibiliser la population aux réalités de la vie avec le lupus et à la nécessité de soins plus complets centrés sur le patient. Dans le cadre des initiatives spéciales du comité ACE (Arthritis Consumer Experts) à l’occasion du Mois de la sensibilisation au lupus, cette capsule de « À la maison avec l’arthrite » propose du contenu qui met en lumière l’expérience des patients et souligne les lacunes importantes dans la prise en charge du lupus.

Au cours de cette capsule, le comité ACE s’entretient avec Mme Ellen Wang, coordonnatrice des programmes auprès de l’organisme et doctorante au centre Arthrite-recherche Canada, au sujet des conclusions importantes tirées du deuxième volet de l’enquête nationale du comité ACE sur le lupus au Canada. On y discute de la manière dont le lupus affecte des aspects de la vie souvent négligés dans les discussions sur les soins de santé, notamment la santé mentale, la grossesse et la planification familiale, les relations, l’intimité, la confiance en soi et le bien-être émotionnel.

Visionner maintenant : https://arthritisathome.jointhealth.org/?p=6954&lang=fr



Arthritis Society Canada
Arthritis Research Canada
Lupus Canada
Lupus Foundation of America
Lupus UK
Lupus and Me
The Voice of Lupus Foundation
LupusChat

Arthritis Consumer Experts (ACE) and Lupus Canada have released Part 2 of the National Survey on Lupus in Canada, a spec...
05/20/2026

Arthritis Consumer Experts (ACE) and Lupus Canada have released Part 2 of the National Survey on Lupus in Canada, a special edition of JointHealth™ insight examining how lupus affects mental health, reproductive health, sexual health and intimacy.

The findings reveal a consistent pattern of unmet needs:
➡ Four in five respondents (80%) reported experiencing anxiety, depression, or insomnia related to their lupus.
➡ Nearly one in four respondents did not receive reproductive health guidance from their health care providers, despite wanting the information.
➡ Only 21% reported that lupus had no impact on their sexual wellbeing, showing that intimacy and relationships are significantly affected for many people living with lupus.

Read the full report here: https://bit.ly/ACENationalSurveyLupusReportPart2_EN

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Le comité ACE (Arthritis Consumer Experts) et Lupus Canada ont publié le deuxième volet de leur Rapport d’enquête nationale sur le lupus au Canada, un numéro spécial du JointHealth™ insight qui examine l’impact du lupus sur la santé mentale, la santé reproductive ainsi que la santé sexuelle et l’intimité.

Les résultats mettent en lumière un schéma récurrent de besoins non satisfaits :
➡ Quatre personnes interrogées sur cinq (80 %) ont déclaré souffrir d’anxiété, de dépression ou d’insomnie liées à leur lupus.
➡ Près d’une personne interrogée sur quatre n’a pas reçu de conseils en matière de santé reproductive de la part de professionnels de la santé, alors qu’elle souhaitait obtenir ces informations.
➡ Seulement 21 % d’entre elles ont déclaré que le lupus n’avait aucun impact sur leur bien-être sexuel, ce qui démontre que l’intimité et les relations sont considérablement affectées chez de nombreuses personnes atteintes de lupus.

Lire le rapport complet ici : https://bit.ly/ACENationalSurveyLupusReportPart2_FR



Lupus Canada
Lupus UK
Lupus Foundation of America
LupusChat
The Voice of Lupus Foundation
Lupus and Me
AiArthritis
World AiArthritis Day
Arthritis Broadcast Network
Arthritis Society Canada
Arthritis Research Canada

Patent games are hurting health equity.1 in 4 Canadians struggle to afford their prescriptions. Some pharmaceutical manu...
05/19/2026

Patent games are hurting health equity.

1 in 4 Canadians struggle to afford their prescriptions. Some pharmaceutical manufacturers use legal maneuvers in the patent system to delay affordable medications from entering the market.

The campaign aims to:

➡ Increase awareness about the impact of patents on patients and the healthcare system
➡ Promote health equity
➡ Increase treatment options for patients

Please visit and share with your network: https://patientsandpatents.info/



Arthritis Research Canada
Arthritis Society Canada
EULAR
American College of Rheumatology

A recent article published on BioSpace summarizes an analysis conducted by Sean Tu of the University of Alabama School o...
05/14/2026

A recent article published on BioSpace summarizes an analysis conducted by Sean Tu of the University of Alabama School of Law. Tu’s work cites multiple examples of pharmas using what the authors term serial litigation to stave off would-be competitors for years, allowing them to keep prices high.

Read the article here: https://bit.ly/PatientsandpatentsNewsMay13_2026



Crohn's & Colitis Foundation
Arthritis Broadcast Network
Arthritis Research Canada
Arthritis Society Canada
EULAR
American College of Rheumatology

In this episode of Arthritis At Home featuring lupus highlights from  , we are sharing our interview with Dr. Andrea Fav...
05/14/2026

In this episode of Arthritis At Home featuring lupus highlights from , we are sharing our interview with Dr. Andrea Fava, Faculty Member at the Johns Hopkins Lupus Center. Dr. Fava speaks about his RheumNow presentation on how a liquid biopsy for lupus nephritis can benefit patients.

Dr. Fava defines what lupus nephritis and systemic lupus erythematosus are. He follows with a definition of what and how a liquid biopsy is done – a procedure that uses urine samples instead of taking a small sample of tissue or cell by using a needle or scalpel to remove the tissue or cell. In traditional biopsy of the kidney, low protein in the urine may not necessarily mean no inflammation. A liquid biopsy can benefit patients because it is less invasive and can predict who is responding to medication by observing trends more frequently and faster. It also reduces the risk of irreversible kidney damage, which in most cases, happens in the first 6 months.

Watch now: https://arthritisathome.jointhealth.org/?p=6943

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Dans cette capsule de « À la maison avec l’arthrite » présentant les faits saillants de notre événement à propos du lupus, écoutez l’entrevue que nous avons menée auprès du Dr Andrea Fava, membre du corps enseignant du Johns Hopkins Lupus Center. Le Dr Fava revient sur la présentation qu’il a faite dans le cadre du Congrès RheumNow expliquant en quoi la biopsie liquide peut être bénéfique pour les patients atteints de néphrite lupique.

Le Dr Fava définit la néphrite lupique et le lupus érythémateux disséminé. Il poursuit avec la définition d’une biopsie liquide et la manière dont elle est réalisée – une procédure qui utilise des échantillons d’urine plutôt que de prélever un petit échantillon de tissu ou de cellule à l’aide d’une aiguille ou d’un scalpel. Lors d’une biopsie rénale traditionnelle, une faible teneur en protéines dans l’urine ne signifie pas nécessairement l’absence d’inflammation. Une biopsie liquide peut être bénéfique pour les patients, car elle est moins invasive et permet de prédire qui répondra au traitement en observant les tendances plus fréquemment et plus rapidement. Elle réduit également le risque de lésions rénales irréversibles qui surviennent au cours des six premiers mois, dans la plupart des cas.

Visionner maintenant : https://arthritisathome.jointhealth.org/?p=6944&lang=fr



Arthritis Broadcast Network
Arthritis Society Canada
Arthritis Research Canada
Lupus Foundation of America
The Voice of Lupus Foundation
Lupus Canada
Lupus UK

Lifestyle changes can have a strong positive impact on the relief of   symptoms and enable a person to manage their dise...
05/12/2026

Lifestyle changes can have a strong positive impact on the relief of symptoms and enable a person to manage their disease. These include:

🏃🏻‍♀️ Exercise – A review of clinical studies found that aerobic exercise (i.e., walking, swimming) has positive effects on well-being, physical function and has the potential to reduce pain.
😖 Stress – Research on mindfulness techniques suggest short term benefits for pain and quality of life.
😴 Sleep - Many studies have shown complex interactions between sleep disturbances, cognitive, hormonal, and immune abnormalities.
⏰ Pacing - It is important to note that pacing is not avoiding activity, but instead it is figuring out the optimal timing for your body. Pacing is thought to reduce flares while improving tolerance for activities over time.

Learn more: https://bit.ly/ACEAboutFibromyalgiaEN



Fibromyalgia Canada
Arthritis Society Canada
Arthritis Research Canada

05/12/2026

In this , Ms. Ramiza Zama, a graduate research student at the University of Manitoba working under the supervision of Dr. Liam O’Neil, defines wh...

05/12/2026

In this , Dr. Roberta Berard, Associate Professor of Paediatrics at Wester University, highlights the connection between inflammatory arthritis a...

May 12th is Fibromyalgia Awareness Day!We would like to recognize the strength of those living with fibromyalgia. Please...
05/12/2026

May 12th is Fibromyalgia Awareness Day!

We would like to recognize the strength of those living with fibromyalgia. Please share to raise awareness, reduce stigma, educate and advocate for more funds for fibromyalgia research.

Learn more about fibromyalgia here: https://bit.ly/ACEAboutFibromyalgiaEN

*Photo from Everyday Health



Fibromyalgia Canada
Arthritis Broadcast Network
Arthritis Society Canada
Arthritis Research Canada

05/10/2026

In 27, Dr. Ali Al-Asmari, a pediatric rheumatologist serving as a lupus fellow at The Hospital for Sick Children (SickKids) and the University of Toronto, shares highlights from a case report on a rare SAT1 variant in early-onset systemic erythematosus.

Watch now: https://youtu.be/plXma4iZ_SA



Lupus Canada
Arthritis Consumer Experts
Lupus Foundation of America
Lupus UK
Lupus Research Alliance
Arthritis Society Canada
Arthritis Research Canada

05/10/2026

In this , Dr. Zahi Touma, a rheumatologist and clinical epidemiologist at the University of Toronto and University Health Network, highlights bes...

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