Resource directory

Coordinate axSpA awareness campaigns globally (notably World AS Day on the first Saturday in May), share research findings across member orgs, and maintain a member directory that’s the most comprehensive single map of country-level patient orgs.

The single best entry point to find your country’s AS patient organisation, and the World AS Day campaign is the closest thing the AS community has to a unifying annual moment.

State-based support groups, weekly hydrotherapy classes (Brisbane in particular), the AS Australia newsletter four times a year, and a resource library including a downloadable AS booklet.

The most AS-specific patient org in Australia. The state structure means the experience is uneven across the country (QLD and VIC are most active), but for a newly diagnosed Australian, this is the right place to find an in-person support network.

Fund Australian arthritis research, advocate for policy and access, publish patient information across all arthritis types, and run the dedicated MyAS axial spondyloarthritis support program with management resources, treatment information, and a phone helpline. General AS info also lives at arthritisaustralia.com.au.

Larger and better-resourced than AS Australia, with the helpline being a real resource for patients without access to a rheumatologist. MyAS is the AS-specific subsite — treat that as the entry point rather than the parent site.

Patient information, regional support groups, advocacy for NHS access to biologics and JAK inhibitors, AS research funding, and a finder for AS-experienced rheumatologists across the UK. Almost 50 years of operation.

The gold-standard country-level patient organisation in the AS world. The “in your area” finder is genuinely useful, the patient publications are consistently good, and the advocacy work has measurably moved NHS policy on early diagnosis.

Patient education, support groups (in-person and online), research funding, advocacy, the Walk Your AS Off awareness campaign, and a partnership with NeedyMeds for drug discount cards. SAA dedicates 100% of its resources to spondyloarthritis patients and is the largest US-based source of information on the disease.

The most comprehensive patient resource for US readers, with strong educational content that extends to non-US readers too. The patient assistance section is particularly useful for navigating the US insurance / biologic-access landscape.

Free membership, monthly Zoom support groups (general SpA, young adults, mothers, caregivers), webinars with rheumatologists and physiotherapists, educational guidebooks for AS and PsA, advocacy through the Arthritis Alliance of Canada’s Consumer Coalition.

Active, well-organised, and the broadest SpA scope of any country-level group. The monthly Zoom groups are accessible from any time zone — useful well beyond Canada.

Online support groups (private Facebook groups by arthritis type, moderated by health advisors), patient education on AS and axial spondyloarthritis, “Stories from People with AS” series, advocacy.

There is no AS-specific patient org in NZ, but Arthritis NZ’s AS pages are good and the moderated FB support groups are real value.

Develop and maintain the classification criteria for axial and peripheral spondyloarthritis, publish the ASAS handbook (the reference for SpA assessment), define disease activity measures (BASDAI, ASDAS), produce treatment recommendations jointly with EULAR, and offer fellowships and grants for SpA research.

Every formal AS diagnosis or research paper since the late 2000s ultimately traces back to ASAS criteria. The authoritative source for the disease definitions everyone else cites.

Drive SpA research and education in North America, develop US-specific referral recommendations, contribute to the joint ACR/SAA/SPARTAN treatment guidelines, run an annual research and education meeting.

The North American counterpart to ASAS for clinical practice. The annual meeting outputs are a useful pulse on what US rheumatologists are paying attention to.

Publish Annals of the Rheumatic Diseases (the leading rheumatology journal), develop ASAS-EULAR joint treatment recommendations for axSpA, host the annual EULAR Congress, run patient-research initiatives.

The 2022 ASAS-EULAR recommendations are the current standard-of-care document referenced by rheumatologists across Europe and beyond.

Virtual fundraising and awareness walk — participants walk where they live, set up personal pages, and donate to SAA.

The single most participatory annual moment for the AS community. Even readers who can’t or don’t want to fundraise can use the day as an awareness anchor.

Community-driven walking and movement initiative for AS awareness and personal-health benefit, with year-round virtual events.

Year-round companion to the May event for readers who want a consistent activity-and-community framing rather than a single-day campaign.

Active patient-led discussion forum. The subreddit has an unusually high comments-to-submissions ratio compared to other rheumatology subreddits, indicating genuine engagement rather than drive-by posting.

Real patients, real conversations, no paywall, no organisational gatekeeping. A good place for the “I was diagnosed yesterday” question that’s hard to ask in person. Caveat: it’s Reddit — the usual public-internet caveats apply.