Pulmonary Hypertension Association President and CEO Matt Granato recently participated in the World Heart Federation forum on rare cardiovascular diseases.
Matt represented PHA and the pulmonary hypertension community at the event in Geneva, Switzerland, with Lauren Janzen, a patient and advocate from Wisconsin.
Matt discussed PHA’s achievements in patient advocacy, such as empowering patients to be their own best advocates and working with them and their caregivers to share their stories with policy makers.
Lauren shared her PH story on a panel of people with rare cardiovascular diseases. She discussed her diagnosis and how she finished nursing school and become a mother through adoption while managing her disease.
“Lauren’s story was very powerful and demonstrated the determination and courage PH patients develop while taking back control of their health and their lives,” Matt said. “We heard similar stories from the other rare CVD patients, which highlights the importance of working together to tackle common challenges.”
In addition to pulmonary arterial hypertension, the forum addressed familial hypercholesterolemia, hereditary hypertrophic cardiomyopathy and transthyretin amyloidosis.
The forum’s goal was to brainstorm solutions to common challenges, such as detection and diagnosis; education among general health care professionals; access to care in expert centers and therapy costs; and patient education to improve quality of life and provide support. Another common challenge is promoting research, including patient recruitment for clinical trials.