Bienvenue au réseau de diffusion sur l'arthrite Arthritis Research Centre of Canada Arthritis Consumer Experts

Le Réseau de diffusion sur l’arthrite dans la liste Feedspot des 40 meilleurs…

Top 40 Arthritis Blog BadgeLe Réseau de diffusion sur l’arthrite dans la liste Feedspot des 40 meilleurs blogues et sites Web sur l’arthrite pour les personnes atteintes de cette maladie.

Le Réseau de diffusion sur l’arthrite (RDA) géré par le comité ACE (Arthritis Consumer Experts) : Actualités et information sur l’arthrite. En tout temps. Grâce à nos supporteurs, notre plus récent événement en direct sur Facebook a rejoint plus de 23 000 personnes en seulement trois jours !

C’est un honneur pour le Réseau de diffusion sur l’arthrite de figurer à la liste Feedspot des 40 meilleurs blogues et sites Web sur l’arthrite pour les personnes atteintes de cette maladie. Ce classement se fonde sur les critères suivants : Continue reading

Arthritis Broadcast Network named one of Feedspot’s Top 40 Arthritis Blogs

Top 40 Arthritis Blog BadgeArthritis Broadcast Network (ABN) – powered by Arthritis Consumer Experts – All your arthritis news and information. All the time. Thanks to our fans, our most recent Facebook Live event reached over 23,000 people in just three days!

Arthritis Broadcast Network is honoured to be named one of the top 40 arthritis blogs and websites for people living with arthritis by Feedspot. Rankings are based on the following criteria: Continue reading

On June 25, run for kids with arthritis and their families!

Join Cassie and Friends for their Scotiabank 5K & Half Marathon Team to raise money for all the kids affected by juvenile arthritis and other rheumatic diseases in BC.

Cassie and Friends Team for Scotiabank 5k for kidsOver the last 10 years, Team Cassie and Friends has laid it all on the course for kids with arthritis. Their team of 100 runners and walkers, from toddlers to grandparents, have transformed the lives of kids and families diagnosed with Juvenile Arthritis and other rheumatic diseases in BC and across Canada.

But, there is still so much more we can do to support and connect families, fund critical research and raise awareness – we hope you’ll join Cassie and Friends! Make a gift or sign up to be a part of their team. Cassie and Friends has created a virtual run for those who are unable to attend the Vancouver event.

Click here to register. Please use charity pin codes (all child registrations will be reimbursed): 5K -17CFS5K or Half Marathon– 17CFS21K

If you have any questions, please feel free to contact Jennifer Wilson at jennifer@cassieandfriends.ca or visit cassieandfriendsrun.ca or David Porte at david@porte.ca

Thank you for being a friend! Continue reading

Maud Lewis: Canadian folk artist and juvenile arthritis champion

Canadian folk artist Maud Lewis is a legend in Nova Scotia and in our eyes, a role model to people living with juvenile arthritis. The story of Maud Lewis came to life on the big screen with Maudie, a biopic released in June. The movie features Sally Hawkins as Lewis and Ethan Hawke as her husband Everett. The film, directed by British filmmaker Aisling Walsh and written by Canadian screenwriter Sherry White, focuses on Lewis’s resilience as an artist, despite hardships. The pictures in this article is from Artsy‘s editorial The Joyous World of Overlooked Canadian Folk Artist Maud Lewis.

Maud Lewis painting, painter with juvenile arthritis

Photo from Artsy: Maud Lewis, Oxen in Spring, ca. 1960s. Courtesy of the Art Gallery of Nova Scotia.

 

Maud Lewis (1903-1970) grew up in the seaside town of Yarmouth, Nova Scotia. She was diagnosed with juvenile arthritis at a young age. Her arthritis left her with a pained and crooked gait. People would make fun of her because she looked and walked different. Her arthritis pain forced her to stay indoors at her parents’ home.  It was here that she began to draw.

Continue reading

EULAR 2017 update on JIA: Never too young; Never too late

EULAR BannerAt this year’s annual EULAR 2017 annual congress, attendees learned about the need for increased collaboration between adult and paediatric rheumatologists to improve outcomes of adults living with active juvenile idiopathic arthritis (JIA).

According to conclusions from a review of more than 50 studies and approximately 3,000 JIA patients, half of adults living with JIA were not receiving adequate treatment, despite the fact that biological have been shown to improve the quality of life in children with JIA, with most of these benefits of treatment in childhood persisting into adulthood.

Presenting the results of her study, Dr. Berit Flato from the rheumatology department at Oslo University Hospital said: “Since 2000, biological and methotrexate have been prescribed earlier in JIA, resulting in increased rates of inactive disease after 1-3 years. Yet, recent reports indicate that only half of adult patients with JIA are on synthetic or biological disease-modifying anti-rheumatic drug (DMARDs).

The inadequate treatment identified in the study partly explains why adults with JIA often experience more pain, poorer health-related quality of life, and lower employment rates.

ACE Founder and President, Chery Koehn, related the study results to the Canadian environment: “The reasons why many adult patients with JIA in Canada fall through this treatment gaps are many. A large factor is the transition of children with JIA from paediatric care to adult care, which often is not as smooth as it should be.”

Cassie and Friends Banner for JIA
JIA affects approximately 24,000 children and teens in Canada, making it one of the most common causes of chronic disability in children. JIA can be devastating and comes with high financial, family and societal burdens. Approximately 60% of children will have active disease into childhood. For more information about JIA, please visit Cassie and Friends, the only charity in Canada dedicated 100# to the paediatric rheumatic disease community (Cassie & Friends).

EULAR update: Talking ’bout a therapy evolution (spondyloarthritis)

EULAR BannerFrom this year’s EULAR annual conference comes major news for people living with spondyloarthritis (SpA). Based on recommendations from a task force of European and North American patients, rheumatologists, dermatologists, and health professionals, new treat-to-target (T2T) guidelines for SpA were announced that emphasize the importance to set a target in shared decision making between a specialist and patient and carefully monitor the disease in order to improve a patient’s health outcome.

“The T2T recommendations are following the principle that you have to define a target you want to reach and adapt management to reach this target. This is independent of the treatment you use to reach the target,” said Professor Desiree van der Hejde, a professor at Leiden University Medical Centre in the Netherlands. Continue reading

The European League Against Rheumatism (EULAR) is heating up! “Don’t Delay, Connect Today”

ACE is attending this year’s European League Against Rheumatism (EULAR) annual congress in Madrid. The city is currently experiencing above normal temperatures with highs near 40°C and the rheumatology topics inside the convention centre are equally hot. Our first dispatch from the meeting looks at the launch of the “Don’t Delay, Connect Today” early intervention campaign. At a joint session for patients, clinicians, and health professionals, attendees heard how all three groups can contribute to the early diagnosis and treatment of rheumatic diseases.

Commenting on the campaign, Cheryl Koehn, ACE President said: “This campaign, by our colleagues in the European Union, neatly parallels the work the arthritis community in Canada has undertaken through the models care initiatives of the Arthritis Alliance of Canada where we define early identification of inflammatory arthritis and access to care as a key element.”

EULAR BannerThe EULAR campaign will encourage patients with typical arthritis symptoms to take action and consult their doctors as soon as possible.

At a presentation on the campaign, John Church, CEO of Arthritis Ireland, explained: “With the development of powerful biologic medications, improvements in care pathways for patients and very effective self-care options, early diagnosis and intervention can lead to significant improvement in lifestyle, physical movements, increased well-being, and work force participation.”

In an official news release, EULAR describes the campaign as follows: Continue reading

Winners of World Autoimmune Arthritis Day 2017 Race for Awareness

World Autoimmune Arthritis Day WAAD17 trophyArthritis Consumer Experts participated in the International Foundation for Autoimmune Arthritis’ May 20 World Autoimmune/Autoinflammatory Arthritis Day “virtual” race. The event saw dozens of nonprofits, advocates, and experts from around the world come together to provide educational and awareness information to patients, their supporters, and the general public.

The event reached 1,000’s of patients and supporters in 62 countries around the world, but the awareness doesn’t stop with the end of this event.

The US Arthritis Foundation states that with autoimmune and inflammatory types of arthritis, early diagnosis and aggressive treatment is critical. In addition, slowing disease activity can help minimize or even prevent permanent joint damage.  The American College of Rheumatology & EULAR – European League Against Rheumatism work hard to keep treatment guidelines up to date in the United States. In Canada, Health Canada and the Canadian Rheumatology Association work together to ensure Canadians living with arthritis get the healthcare they need. All progression of these diseases is permanent and irreversible – so early intervention is necessary, not only to avoid unnecessary damage and disability, but to avoid overburdening an already exhausted healthcare system (regardless of country) that long term disability healthcare costs would add to the problems.

Arthritis Consumer Experts is honoured to be crowned one of #WAAD17’s Nonprofit Race Team winner and be ranked beside other patient organizations. Here is a list of this year’s winners: Continue reading