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Review
. 2021 Dec;187(4):425-428.
doi: 10.1002/ajmg.c.31942. Epub 2021 Nov 6.

The power of patient-led global collaboration

Lara Bloom  1 , Jane Schubart  2 , Rebecca Bascom  3 , Alan Hakim  4 , Clair A Francomano  5
Affiliations
Review

The power of patient-led global collaboration

Lara Bloom et al. Am J Med Genet C Semin Med Genet. 2021 Dec.

Abstract

In late 2017, the global nonprofit, The Ehlers-Danlos Society (TEDS), was awarded a "Pipeline to Proposal" Tier A award from the Patient-Centered Outcomes Research Institute (PCORI). The goal of this application was to form a team of patients, researchers, other community support groups and stakeholders who are focused on establishing the Ehlers-Danlos Comorbidity Coalition to address the common health issues associated with this group of high morbidity, high disease burden conditions. The ongoing Coalition that is now funded by individual donors and expanding in its mission and members, is an example of successful collaboration spanning over borders and priorities.

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References

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