At the heart of rare disease communications lies a constant challenge. How do you speak to patients, caregivers, clinicians, researchers, and donors, all at once and all with purpose?
As a communications leader at the Pulmonary Hypertension Association, I developed and executed multi-channel strategies that informed, engaged, and mobilized diverse audiences across the rare disease community.
In this role, I led communications efforts for a national rare disease nonprofit focused on pulmonary hypertension (PH). I wrote, edited, and designed a weekly newsletter that reached more than 35,000 patients, supporters, and healthcare professionals. For many in the PH community, where the journey can be isolating and overwhelming, this resource became a vital source of connection. That work laid the foundation for a broader strategy to unify messaging and drive engagement across multiple platforms.
At PHA, I built campaigns that welcomed new audiences and collaborated across departments to gain earned media and celebrity support. I launched fundraising appeals tailored to individual and community motivations, and developed video and print materials for special events and advocacy efforts. I worked closely with colleagues to bring strategy into action. Whether pitching stories to press, producing videos for international conferences, or finalizing meaningful print and digital donor campaigns, our team connected our audience with empathy and understanding.
As a web designer and developer, I also led a grant-funded upgrade to our PH care portal. I collaborated with internal teams and outside vendors to build a new search function that helped patients find pulmonary hypertension specialists across the U.S. This tool directly improved access to care and served as a lasting outcome for both the community and the funder.
Additionally, I created a weekly infographic series for patients to understand how best to manage their care with common concerns such as talking with physicians, weather extremes, and power outages.
From migrating an outdated fixed-width website to a modern, responsive WordPress platform, to producing impact reports and supporting event logistics, I managed projects with a focus on clarity, compassion, and accessibility. Every piece had to do more than deliver information.