Resources
Looking for extra support on the road to adult arthritis care? Here are some additional research-based resources to help youth, parents, and caregivers find trustworthy information, practical tools, and community connections. From managing medications and understanding the healthcare system to planning for school, work, and everyday life, each resource offers guidance to help you feel more confident and prepared along the road to adult arthritis care.
MyTransition App
This app provides youth the opportunity to assess where they are at in their transition journey by evaluating themselves on milestones while setting goals to strengthen their areas of weakness. The app is available on Apple devices. Click here to download the app.
Arthritis Consumer Experts
Arthritis Consumer Experts (ACE) provides free, science-based information and education programs to people with arthritis. ACE serves people living with all forms of arthritis by helping them take control of their disease and improve their quality of life through education and empowerment.
Arthritis Foundation – Making the Move to an Adult Rheumatologist
A resource written for parents to give them an idea of what transition looks like and how to support their child throughout the process.
Arthritis Society Canada
Arthritis Society Canada represents the six million people in Canada living with arthritis today, and the millions more who are impacted or at risk. Powered by the trust and support of donors and volunteers, Arthritis Society Canada is fighting arthritis with research, advocacy, innovation, information and support.
American College of Rheumatology
American College of Rheumatology’s Pediatric to Adult Rheumatology Care Transition tool is built for pediatric and adult rheumatologists to support patients in their transfer. Contains letters to send to the patient or other physicians to build relationships.
Association Française des Polyarthritiques et des rhumatismes inflammatoires chroniques (French only resource)
Reconnue d’utilité publique depuis 2009, l’Association Française des Polyarthritiques et des rhumatismes inflammatoires chroniques (AFPric) œuvre au quotidien pour défendre les intérêts des malades et pour leur permettre d’être acteurs de leur parcours de soins et des décisions qui les concernent.
Canadian Rheumatology Association
The Canadian Rheumatology Association (CRA) is the national professional association for Canadian rheumatologists. The CRA’s position paper – Bridging the Gaps: Optimizing the Transition from Pediatric to Adult Rheumatology Care – highlights the key challenges impacting rheumatology patient transition and identifies potential solutions to best address these challenges to ensure current and future generations receive the care they deserve.
Cassie + Friends Society for Juvenile Arthritis and other Rheumatic Diseases
Cassie + Friends is the only national charity in Canada entirely dedicated to transforming the lives of children and families affected by Juvenile Arthritis and other rheumatic diseases through connection, action, research, education and support. In addition to a free Youth Mentorship program and regular in-person events, they offer resources to help young people prepare for the transition from pediatric to adult care, including a video library featuring perspectives from youth and health care professionals, with content ranging from a few minutes to longer, in-depth sessions.
Chu Sainte-Justine Centre hospitalier universitaire mère-enfant – Parachute (French only resource)
Le programme Parachute propose des outils à toi, ta famile et ton équipe de soins afin de te permettre d’atterrir en douceur dans le milieu de soins pour adultes.
Provincial Council for Maternal and Child Health
The Provincial Council for Maternal and Child Health developed the CCKO (Complex care for Kids in Ontario) Youth Transition to Adult Care Toolkit resource. The CCKO provides a transition resource guide that will help the patient or caregivers understand what Ontario services, programs, and funding supports they are eligible for.
Sickkids Guidelines for Transition from Pediatric to Adult care
This resource from Sickkids outlines goals for transition preparedness to strive for for a certain age group. Also, it provides links to academic papers regarding the transition from pediatric to adult care. Click here to download the guidelines.
Sickkids Transitioning to Adult Care
This resource describes how to create a MyHealth 3 Sentence Summary, an easy and effective strategy to take with you as you navigate appointments alone. Click here to learn more.
Take a Pain Check Foundation
Take a Pain Check Foundation is a global, youth-led nonprofit dedicated to empowering, educating, supporting, and advocating for young people living with rheumatic diseases. They equip youth with the knowledge, tools, and community they need to navigate their healthcare journey and create lasting change.