Earning Trust with Rare Disease Communities
Interest in rare diseases is surging with the volume of reports in social and traditional
media on track to double over last year. Chris Smith, president of SmithSolve, presented
this new research at the
6th Annual Rare Disease Leadership Summit, along with a
communications model to better engage stakeholders in the rare disease arena.
This two-day conference in Washington, D.C. attracted experts from government agencies,
patient organizations, industry and academia to discuss topics ranging from health
policy to social media, patient advocacy and reimbursement.
Smith focused his presentation on the opportunities — as well as the risks — for
the biopharmaceutical industry. He noted that organizations need to change the way
they think about communications in the rare disease space, moving from the traditional
"top-down" strategy to an approach built on informed decision-making, shared knowledge,
and earned trust.
He also urged companies to engage patient groups, experts and policymakers as early
as possible, and outlined steps for balancing science and empathy when communicating
with rare disease communities. This emotional intelligence is especially important
given the high levels of stress faced by families when a loved one, often a young
child, is battling a rare disease.
Jayne Gershkowitz, conference chair and senior director of patient advocacy and
public policy at Amicus Therapeutics, echoed the importance of building trust among
patient organizations: "Chris outlined practical steps for building strong relationships
in rare disease communities. His approach takes into account the new and enriched
ways patient groups are connecting with each other and with other stakeholders using
social media."
Contact SmithSolve to
learn how your organization can better engage rare disease communities.