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.
RESULTS – RARE DISEASE
Emerging company was identified as the ‘Charter Supporter” of this emerging Patient Organization, building trust and demonstrating corporate leadership in this defined patient area where they are in R&D.
Company has two-way dialogue with Organization leadership and patients who provide input and perspectives on a variety of corporate activities
Company garners insights and participation with natural history study, gaining a better understanding of the condition
Insights from Patient Organization and patients themselves inform the corporate strategy and identity of this emerging life sciences company as they progress through the clinical stages of drug development.