At the heart of rare disease communications lies a constant challenge: how do you speak to patients, caregivers, clinicians, researchers, and donors at the same time, while ensuring each audience feels informed, supported, and connected?
As a communications leader at the Pulmonary Hypertension Association, I developed and executed multi-channel strategies that educated, engaged, and mobilized diverse audiences across the pulmonary hypertension (PH) community. My work focused on translating complex medical information into clear, accessible content while helping people affected by this rare and often misunderstood disease find reliable resources and support.
One of the most meaningful parts of this work was producing a weekly newsletter for a community of more than 35,000 patients, caregivers, healthcare professionals, and supporters. I wrote, edited, and designed each issue with the goal of making complex medical information easier to understand and more relevant to daily life. For many readers facing long diagnostic journeys and limited access to local expertise, the newsletter became a trusted source of education, reassurance, and connection.
I also developed patient-focused educational graphics and practical resources to help individuals manage the everyday realities of living with pulmonary hypertension. These materials covered topics such as preparing for medical appointments, coping with extreme weather or power outages, and planning for travel. The aim was always to translate clinical guidance into clear, usable information that people could apply in real situations.
In addition, I supported national awareness efforts through multimedia campaigns and outreach initiatives. This included coordinating celebrity ambassador participation, helping secure more than $1 million in donated media placements, and producing digital and video content for advocacy campaigns and international conferences.
Together, these efforts helped bring greater visibility to a frequently overlooked disease while strengthening the organization’s relationship with the community it serves.
As a web designer and developer, I also led a grant-funded upgrade to the organization’s PH care portal. Built on a WordPress platform, the portal included a searchable physician directory that allowed patients to locate healthcare professionals with specialized credentials in treating pulmonary hypertension. By collaborating with clinicians, program staff, and technical partners, I helped translate complex credentialing information into an intuitive search experience that improved access to specialized care.
From launching digital resources and educational campaigns to migrating an outdated website to a modern, responsive platform, my goal was always the same: ensure that people living with pulmonary hypertension could find clear information, trusted guidance, and a community that understood their experience.