Whether you were diagnosed last week or last decade, you might be looking for resources on living with arthritis. Since I am fairly involved with the community – I’m a Cure Arthritis Ambassador for the Arthritis National Research Foundation – I thought I would put together a list of resources. They are organized by type, such as organization, convention, social media, etc. Please feel free to comment with any that I may have missed. The point of this is to help other people, and I hope that it helps you, too.
These are some of the organizations out there. Some are for research, some are for awareness, some are for all. I have included in brackets the country that they are based just in case you want to know.
Arthritis Foundation – [US] This is the most well-known foundation in the US for those of us with arthritis and probably the largest one. As they say, “The Arthritis Foundation is the Champion of Yes. We lead the fight for the arthritis community through life-changing information and resources, access to optimal care, advancements in science and community connections. Our goal is to chart a winning course and make each day another stride towards a cure.”
Kids Get Arthritis Too – [US] This is a subset of the Arthritis Foundation and is about, well, kids. Specifically, “The Arthritis Foundation’s online home for the 300,000 families living with juvenile arthritis” (from their website)
Arthritis National Research Foundation – [US] “The Arthritis National Research Foundation’s mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases.” (their website)
JGCAF – [US] Jeffrey Gottfurcht Children’s Arthritis Foundation “The Foundation is a wish-granting organization whose mission is to make dreams and wishes a reality for children living with Juvenile Arthritis.” (their website)
Arthritis Care – [UK] My understanding is that they are the UK equivalent of the Arthritis Foundation. “Arthritis Care exists to support people with arthritis. We are the UK’s largest charity working with and for all people who have arthritis.”
NRAS – [UK] The National Rheumatoid Arthritis Society says, “We aim to provide information and support for people with rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA), their families, friends and carers, as well as health professionals with an interest in RA”
Arthritis Research UK – [UK] Their website says, “Everything we do is driven by knowledge to positively impact on what matters to people with arthritis. Our long term commitment is to: prevent the onset of arthritis[,] develop a cure for arthritis[,] transform the lives of those with arthritis.”
MedX – [US] “This two-day educational event will focus on the future of medical education in the new Millennium, the role technology and networked intelligence might play in driving educational innovation, the new challenges facing health care education in the new Millennium, as well as the need to change the culture of medical education to be more patient-centered, participatory and patient-safety-focused.”
Advocacy Summit – [US] “The Advocacy Summit is an annual event when people living with and affected by arthritis come from every corner of the United States to convene in Washington, DC.. There they learn how to advocate and build a continuing relationship with their Members of Congress and their staff. Children are welcome to attend the Kids’ Summit where they learn to advocate for themselves and meet other children living with and affected by arthritis.”
JA Conference – [US] This is “The Arthritis Foundation’s nationwide event that has brought together and educated kids and families since 1984.”
Arthritis Research UK Centre for Sport, Exercise and Osteoarthritis Conference: Physical Activity and Osteoarthritis – [UK] “The conference aims to raise awareness of Musculoskeletal health as a lever for individual and population health and wellness.”
BSR Rheumatology – [UK] “Rheumatology 2015 will be a world-class conference held at Manchester Central and run by the British Society for Rheumatology (which incorporates the British Health Professionals in Rheumatology) for all health professionals in the field of Rheumatology. Be a part of the UK’s biggest Rheumatology conference.’
If you have arthritis or another chronic pain condition but don’t know anyone else who does, it can feel very isolating. Here are resources for finding other people like you and feeling less alone.
Creaky Joints – From their website: “Today, more than 75,000 people with all forms of arthritis and their families have been touched by CreakyJoints with meaningful support, updates and education, innovative advocacy and global research projects. And CreakyJoints continues to grow with new members signing up every day.”
The Pillow Fighters – From their website: “I’m building a supportive community (*cough*army*cough*) of positive, young people who just happen to have chronic illness. It’s so easy to just talk about the negatives in the chronic illness community, but I’m changing that.”
Arthur’s Place – As they say, they are “the first online magazine and social network specifically for young people with arthritis.”
On social media, use these hashtags (or similar ones) and find other people. There are a lot of us, especially on Twitter, and there are a lot of amazing people in our own little community right there! #arthritis #rheum #psa (psoriatic arthritis) #ja #jia #ra #ChronicLife #fibro etc.
There’s also a great infographic over at Superior Magnetics featuring everything you need to know about arthritis. If you’re looking for statistics, that’s a great place to start!
Has this helped you? Do you have anything else that I missed?