Non-Profits Join Forces on Chronic Conditions
By Rachel Walden — March 31, 2009
This week, we learned of the Overlapping Conditions Alliance, a group of nonprofit organizations “seeking to advance the scientific, medical and policy needs of individuals affected by medical conditions that frequently overlap.”
The conditions – chronic fatigue syndrome, endometriosis, interstitial cystitis, irritable bowel syndrome, temporomandibular joint disorders (TMJ), and vulvodynia – disproportionately or solely affect women. All are poorly understood, and many who suffer from these conditions are misdiagnosed and receive inappropriate treatment.
While the OCA website does not yet have a lot of detail, the partnered organizations are:
- Chronic Fatigue and Immune Dysfunction Syndrome Association of America
- Endometriosis Association
- Interstitial Cystitis Association
- International Foundation for Functional Gastrointestinal Disorders
- TMJ Association
- National Vulvodynia Association
The Overlapping Conditions Alliance will advocate for funding to research the common underlying mechanisms and risk factors for these conditions, so that preventive strategies and more effective treatments can be developed.
Why is fibromyalgia not listed? As someone who has fibro, vulvodynia, IC, TMJ, and IBS, I have no doubt that they are all related in some way. Most of us with one of these conditions often have more than one as well.
Yes, I was very excited to learn of this alliance! These are all conditions that we see overlapping in our patient data communities at CureTogether – fibromyalgia, migraine, depression, acid reflux, and many others as well (charted here – http://tr.im/h8s8)
I look forward to seeing what comes out of this alliance, and whether they will involve patients in the process as well as doctors and researchers.
Mrs Spock, I don’t know the answer to that, but I have also read a bit about endometriosis and lupus occurring together, lupus being another not-entirely-understood condition.