In 2017, CreakyJoints lived up to our mantra of “bringing arthritis to its knees.”
We increased our footprint in the world with the launch of CreakyJoints Australia, began planning 2018 patient-centered programming in Latin America and Europe, conducted more than 25 major research projects, and of course, had fun by raising awareness at New York Fashion Week.
Join us in celebrating our 2017 highlights. Be proud because we did this together.
We fought to ensure our community was heard
- We spoke out at the Institute for Clinical and Economical Review
- We tackled the unfair and cruel practice of non-medical switching
- We recruited and trained more than 100 new patient advocates via our 50-State Network and submitted seven written/oral testimonies at state houses across the country
We educated our community
- We increased awareness on drug pricing
- We developed patient guidelines on family planning, rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis
- We reported on news that impacts the arthritis community
- We explained the role and purpose of medical foods
We made sure patients were central in research
- We registered more than 9,000 people in ArthritisPower and captured over 77,000 patient-reported outcomes, bringing our total to over 12,000 ArthriitsPower users and 97,942 patient-reported outcomes
- We published important research on pregnancy
- We developed or contributed to eight research presentations at the American College of Rheumatology Annual Meeting and five research presentations at the European League Against Rheumatism Congress
We supported our community
- We created a space to discuss important topics during our monthly twitter chats.
- We shared what it’s like for people living with arthritis.
- We posted inspirational and supportive content on the CJ Facebook Page and shared a daily arthritis fact on Twitter.
- We raised more than $44,000 to help arthritis patients in Puerto Rico after the devastation of Hurricane Maria
Looking ahead
As the year came to a close, we posed a few questions to Global Healthy Living Foundation co-founder Seth Ginsberg about what happened in 2017, and what he foresees next year.
What in the past year was most encouraging to you?
SG: It’s encouraging how many people have accessed our materials, resources, support, and participated in our advocacy and patient-centered research opportunities. This year more than 12,000 used ArthritisPower, and more than 1 million people accessed the education and support materials from CreakyJoints.org. Amazing growth this year!
Where, do you think, is there the most room for improvement?
SG: We have a lot of room for improvement in reaching under-served communities, especially people who do not speak English. We’re disappointed at how devastated the island of Puerto Rico was by Hurricane Maria, and we are glad to have done our part to help — raising more than $44,000 for our Puerto Rico Rheumatology Relief fund.
In the coming year, we plan to do much more to support the needs of Spanish-speaking people both in the United States and throughout Latin America.
What do you think are likely to be some of the most important developments in 2018?
- We will continue to expand ArthritisPower, with better integration into the doctor’s records or health system records, as well as improved functionality and better features for patients and their families.
- We will improve our Spanish-language capabilities and services offered to those who are not native English speakers.
- We will be launching a set of resources to help people navigate their health insurance (or lack thereof) when living with a chronic disease like arthritis. The helpful ‘insider’s guide to managing your health insurance’ was developed for patients and by patients, with finishing touches being made this December and a planned launch for January, 2018 (look for it on www.50statenetwork.org).
