Published: 10/07/2019 Tags: The Ehlers-Danlos Society News

Volunteers of The Ehlers-Danlos Society represent the community at the CIPM Policy Congress

The Ehlers-Danlos Society remains committed to reducing the pain of our community. Towards this goal,  volunteers of The Ehlers-Danlos Society have been participating in the Comprehensive Integrative Pain Management Policy Congress.

This engagement with other organizations is particularly important to ensure that the unique pain management concerns of people with the Ehlers-Danlos syndromes, and hypermobility spectrum disorders, are represented as comprehensive integrative pain management (CIPM) guidelines are considered.

The CIPM Policy Congress recognizes chronic pain as a complex illness, often co-existing with other conditions such as sleep and mood disorders, and requiring treatment that is multi-modal, patient-centered, individualized, and team-based. Ample evidence demonstrates CIPM’s effectiveness in reducing pain and improving function, but the work of the CIPM Policy Congress is critical to making CIPM accessible to zebras everywhere.

This month the CIPM Policy Congress received a significant grant from award, which will sustain their efforts to unite key stakeholders and decision-makers to develop an action plan to increase the number of CIPM programs, and improve access to CIPM in the US. The funded proposal includes plans for several parallel projects to occur over the next two years. CIPM white papers will be completed and disseminated with high profile communication this fall. Additionally, phase one of pilot education for purchasers of healthcare will be developed and implemented.

This conference effort will bring together leaders from about 75-100 organizations and agencies, all committed to advancing this care. This includes payors, providers, patients, researchers, government agencies, policy makers and experts. These connections are particularly important for advocating for adoption and implementation of the recommendations in the Health and Human Services task force report “Pain Management Best Practices” released in May 2018. The EDS/HSD patient community will have access to this exciting progress, being made by a passionate and influential group of stakeholders on behalf of chronic pain sufferers, via the policy congress website and ongoing social media dissemination.

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

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