Amyloidosis Breakfast Meeting and Earned Media

The Challenge

The primary challenge was a lack of widespread awareness surrounding Amyloidosis and the need for better structural support for the rare disease community. The core objective was to educate lawmakers and stakeholders to drive support for the enactment of a Rare Disease Advisory Council in Massachusetts. There was a critical need to establish this council so it could officially advise the Governor, General Court, and Department of Public Health on the incidence and status of rare diseases, as well as develop and maintain a comprehensive rare disease plan for the Commonwealth.

Our Approach

Working with the client, we implemented a highly localized public relations and advocacy campaign centered around a legislative breakfast briefing to highlight the unmet needs of rare disease patients in Massachusetts. Key pillars of the approach included:

1. State House Briefing

   • We organized and executed a dedicated Rare Disease and Amyloidosis Policy Breakfast at the Massachusetts State House to directly educate lawmakers on the condition and advocate for the establishment of a state Rare Disease Advisory Council.
     
     

2. Community & Stakeholder Alliance

   • We established a sustainable community alliance by partnering with lead advocacy organizations, such as Rare New England and the Heart Brothers Foundation, to unite stakeholders and drive continued Amyloidosis awareness and support for rare disease legislation.
     
     

3. Localized Media Outreach

   • We executed a targeted, localized public relations effort designed to generate both traditional and social media support, amplifying the patient voice and creating public momentum for the legislative goals.

The Outcome

The localized advocacy and media strategy successfully elevated awareness of Amyloidosis and drove tangible legislative momentum in the Commonwealth. Key milestones included:

1. Legislative Progress

   • Due to the strong support generated by the advocates, legislation to create a Rare Disease Advisory Council (SD 2264/H 4268) was successfully filed and began moving through the Massachusetts House and Senate.
     
     

2. High-Profile Recognition

   • The campaign successfully secured an official proclamation from Governor Charlie Baker, officially designating February 6 as Cardiac Amyloidosis Awareness Day in the Commonwealth.
     
     

3. Successful Event Engagement & Media Reach

   • The policy breakfast successfully attracted close to 50 attendees and featured a diverse lineup of speakers, including a geneticist, a caregiver, legislators, and rare disease representatives. Furthermore, the PR effort secured valuable earned media coverage, such as a localized feature article in the MetroWest Daily News.