Dear PHA Community,
As the end of 2018 approaches and we all take time to reflect on the past year, including remembering loved ones we have lost, I want to express my deep gratitude for all of you who joined us in some way throughout 2018 to support the work of the Pulmonary Hypertension Association (PHA). I remain in awe by the many inspiring ways in which our PHA community comes together to support one another and improve the lives of those affected by pulmonary hypertension (PH).
Whether you mentored or supported individuals with PH as a volunteer or caregiver, or were among those who attended or presented at our Conference and Scientific Sessions or PHA on the Road forums, or if you took part in or led one of our hundreds of support group meetings and calls throughout the year – your participation was key to providing knowledge, support and hope to our community.
For the many individuals who donated to PHA, organized and attended fundraisers or spoke on behalf of PHA — your participation helped provide the necessary resources to achieve our mission. For the thousands of you who shared tweets, Facebook posts and shares, blog posts on The Right Heart and media interviews during Pulmonary Hypertension Awareness Month and CTEPH Awareness Day in November, your stories were essential to raising awareness of PH. If you visited, called or emailed your legislators and council members to urge passage of bills and proclamations, your efforts helped create better policies, access to care and quality of life.
For those in our health care community who worked every day to treat and care for individuals with PH and conduct PHA-funded research; for health care providers, caregivers and patients who shared their knowledge with others through Pathlight, Advances in PH, our e-newsletters, meetings, or videos and webinars; for all of you in our expanding network of 62 Pulmonary Hypertension Care Centers (PHCCs) nationwide; and for the more than 750 patients and the 42 PHCCs who have participated in the Pulmonary Hypertension Association Registry (PHAR) in order to further PH research into better treatments and a cure — your knowledge, work and participation improved our present lives and showed us a future empowered by hope.
I am continuously thankful for the tireless commitment and expertise of PHA members on our PHA Board of Trustees, Scientific Leadership Committee and various other PHA committees and task forces who provided strategic direction, expertise and inspiration. Finally, I am grateful for our hardworking, dedicated staff who managed and supported PHA programs and services to our community throughout the year.
As we look to 2019 and the future, I am excited to share with you news from last winter’s 6th World Symposium on Pulmonary Hypertension (WSPH), an international gathering of more than 1,300 leaders in PH who have met every five years since 1973 to discuss the current state of the science in PH and identify future needs and priorities in order to better treat individuals with PH.
In 2018, for the first time, a task force on the patient’s perspective was created to review the importance of patient-centered care and research in PH and the critical role of patient associations such as PHA in supporting patients and their loved ones, lobbying for improved access to care, and providing input on clinical research. This historic task force, co-chaired by Board of Trustees member Michael McGoon, M.D., produced one of 14 reports describing the meeting, scientific advances and future priorities that will be published in the January 2019 issue of the European Respiratory Journal. It is truly a gift to the PH community that these papers were released online this week in the ERJ Early View and are available in open, free access now. I encourage you to read all the task force findings and in particular “The importance of patient perspectives in pulmonary hypertension” — which I hope underscores yet again the importance of your participation and involvement in the PHA community. We are excited to continue working with you in 2019.
As always, I look forward to hearing your thoughts at gro.noitaicossAHPp@AHPgnoWdarB. All of us at PHA wish you a wonderful holiday season and new year.
Brad A. Wong
PHA President & CEO