Company identified a patient leader with demonstrated non-profit leadership experience, poised to lead the creation of this US- based patient advocacy organization as Executive Director.
Company provided an unrestricted grant to underwrite the start up costs associated with the groups build out.
Company hired consultant to assist the Executive Director with strategic and tactical support, outreaching to centers of excellence to identify diagnosed patients, build a website and other educational tools and establishing a repository for all things related to this condition.
Patient Organization garnered additional corporate support to fund the mission and now stands fully functioning as a trusted go to for patients and caregivers once diagnosed with this disease.