Dear PH Community,
As we enter the fifth month of physical separation from our friends, family, colleagues and others, their absence reminds us of both the many things we put on hold — celebrations, shopping, travel, school and college – and our unwavering desire to return to our pre-pandemic lives, to reconnect and to regain a sense of momentum. Our sense of hope for the future has never diminished.
Similarly, we at the Pulmonary Hypertension Association (PHA) reflect on the prior year as we release the PHA 2019 Annual Report. The report acknowledges our proudly patient-focused, patient-driven history – and our impact and momentum into the future.
The PHA 2019 Annual Report celebrates our strides in working with the PH Community to fulfill our mission to extend and improve the lives of those affected by pulmonary hypertension (PH). It shows the impact we make together through research, education, support and advocacy. And it demonstrates our combined achievements in our strategic plan’s key focus areas: empowering patients and caregivers, promoting quality patient care, catalyzing research for a cure, advocating for the PH community and ensuring financial resources to meet our mission.
PHA’s achievements extend beyond a given year highlighted in an annual report and represent the community’s momentum toward our vision of a world without PH, empowered by hope. For example, our 2019 advocacy efforts led to major changes this year related to safety protocols for the first generic PH medication. We’re proud that our advocacy convinced policymakers and manufacturers to merge two ambrisentan Risk Evaluation and Mitigation Strategy programs into one and by doing so reduce a great amount of life-threatening confusion.
Our investment in research also extends beyond 2019. PHA-funded research studies use data from those of you who generously participate in the PHA Registry to better understand, identify and treat PH. Findings from the groundbreaking “Redefining Pulmonary Hypertension through Pulmonary Vascular Disease Phenomics” (PVDOMICS) study partially funded by PHA aim to revolutionize PH classification and ultimately translate into new treatment in the clinical setting.
The PHA 2019 Annual Report illustrates the expanding network of PHA-accredited PH Care Centers, which aim to provide world-class care through Centers of Comprehensive Care and Regional Care Centers (RCP). RCPs make PH care more accessible for people from smaller communities, reducing the travel burden for patients and caregivers.
The achievements highlighted in the PHA 2019 Annual Report and the lasting impact on the lives of those affected by PH would not be possible without all of you, working together to help meet our mission.
Your time serving on committees, hosting and participating in virtual fundraising events, leading support groups and answering calls, creating educational materials, writing to your elected officials and providing financial support is essential during this extraordinary and challenging time. Your participation allows us to educate, engage and support the PHA community, despite continued uncertainty from the pandemic. It also allows us to share and celebrate our success, as in the PHA Annual Report.
Our success demonstrates the passion and commitment from all of you in the PH community. We hope you enjoy seeing the impact you helped make throughout last year and the momentum it provides for the future. Please download the report, and email us with questions, concerns or suggestions. I welcome your feedback and hope you enjoy the report.