FDA Galactosemia Advocacy Campaign

The Challenge

Patients living with Galactosemia face a significant disease burden but lack an approved treatment in the US. The core challenge was to quickly mobilize the patient community and stakeholders to educate decision-makers on this burden and build clear, evidence-based support for the FDA's priority review and approval of a potential new treatment.

Our Approach

We implemented a rapid response advocacy and "surround sound" communications campaign with defined calls to action. The strategy and message development plan was executed through several key pillars:

1. Patient Storytelling & Social Media

   • We developed weekly social prompts, resources, and images to help the community share their stories online. We launched the #PaveTheWayFDA hashtag alongside the existing #ThisisGalactosemia tag to center the community's voice and expand the campaign's reach.
     
     

2. Community Activation

   • We launched a Change.org petition titled "Pave the Way, FDA, for the Potential First Treatment for Galactosemia" to create a centralized, urgent call to action for the public to rally behind.
     
     

3. Stakeholder Engagement

   • We engaged the broader rare disease community to urge the FDA to incorporate patient voices into their review. This included drafting a group letter of support circulated to 12 rare patient advocacy organizations, as well as collaborating with the EveryLife Foundation’s Rare Disease Congressional Caucus to submit a letter to Members of Congress.

Campaign Hashtags

#ThisisGalactosemia #PaveTheWayFDA

The Outcome

The targeted campaign successfully activated the community and generated significant attention and support:

1. Petition Success

   • The Change.org petition rapidly grew to over 10,270 supporters, generating more than 274,000 views and 3,500 shares. The impressive growth even prompted direct outreach and praise from a Deputy Campaigns Director at Change.org.
     
     

2. Massive Social Reach

   • The campaign drove more than 2,500 social media engagements and achieved an overall reach of over 2 million. In May and June, there were over 750 dedicated social conversations.
     
     

3. Increased Organizational Output

   • The Galactosemia Foundation's digital presence saw a massive boost, sharing 30 posts on Facebook within 74 days—a significant increase compared to their usual average of just five posts per month.
     
     

4. Broad Stakeholder Support

   • The initiative successfully secured backing from prominent organizations, including Rare New England, the National Coalition for Infant Health, and Research!America, presenting a united front to lawmakers and the FDA.