A group of rare disease company leaders had been informally meeting to discuss challenges and opportunities for better serving the needs of rare disease patients for a few years. In early 2021 as a new U.S. Administration took federal office, these stakeholders recognized an urgent opportunity to formally unite with one voice to express their position on federal and state policies impacting the development and delivery of treatments for the one in 10 Americans that live with a rare disease. It would be the first alliance of its type to bring together innovative companies in the rare disease space with a shared objective of advocating on behalf of the rare disease patients they collectively serve.
ASC was retained at “day zero” to build the brand, narrative and messaging, communications strategy, and content that could be leveraged to tell their story, engage with policymakers, advocate for policy positions, and ultimately recruit new members. We started from scratch but had urgency to act quickly to ensure their voice was heard as critical policies were being discussed that, if changed, could impact the availability of rare disease treatments to patients.
The Rare Disease Company Coalition was formally launched on May 13, 2021 to represent life science companies committed to discovering, developing, and delivering rare disease treatments for the patients they serve.
As a Coalition, the goal was for this entity to be recognized as the #OneRareVoice of hope for the millions of Americans awaiting a rare disease treatment to be delivered, by ensuring Capitol Hill understood the challenges associated with rare disease treatment development.
Over the course of six months, ASC oversaw the design of the Coalition logo and visual identity, including the creation of social media and marketing collateral; managed the design, development and ongoing maintenance of a website that continues to attract thousands of visitors each month; developed a timely and engaging video and associated ad campaign to target Capitol Hill, ultimately driving 1,700 visitors to the website across two pivotal weeks when key policy was being developed; advanced brand awareness and built third party relationships across social media and digital platforms; developed educational materials, including five issue-based overviews; launched a social media strategy, and managed the execution across Twitter and LinkedIn, resulting in robust organic audience growth; and drove a robust editorial strategy, resulting in over 1,100 media mentions in its first year.
The Coalition experienced significant growth, doubling the size of its membership in its first six months, and establishing a strong foundation and brand reputation for continued impact.
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