• 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.


  • 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.