From rare disease to social movement

For more than 30 years, The Ehlers-Danlos National Foundation worked hard to advance awareness, research, hope and community for people living with the Ehlers-Danlos syndromes (EDS) and myriad painful, degenerative, associated conditions they too- often endure.

Building on their strength as a core member of the EDS community, we repositioned the EDNF as “The Ehlers-Danlos Society,” with an eye towards strengthening its research, education, and awareness-raising capabilities.

Strategically, moving from the “foundation” model, where funding and research priorities are top-down, to a “Society” model, where the medical community drives research and education priorities, while the patient and caregiver communities drive fundraising and awareness efforts.

Led transformation of rare disease charity from one of several U.S. based institutions into the world leader for Ehlers-Danlos research, education, awareness, and patient support.

Process

• Positioning, vision, values, and voice
  Redesigned logo, wordmark, and visual system
• Segmentation, targeted messaging
• Development strategy, messaging, and fundraising design
• Communications, social media, website strategy and design

Results

• Within 24 months, The Ehlers-Danlos Society becomes the central, authoritative, global node for research, education, awareness, patient support, and community

• Fundraising increase of 600%, with active annual donor base growth of 500%
• Conference attendance grows 300%
• Social media community increases 400% on Facebook and 2000% on Instagram
• Website ranked #1 by Google, site visits up 1000% per month with unique visitors growing over 500%