Dear PHA Community,
I’ll never forget my first experience with the PH Community and the Pulmonary Hypertension Association (PHA). It was day one of the 2016 PHA International PH Conference and Scientific Sessions. Today, after nearly two years of serving as your president and CEO, I’ve come to appreciate just how much our biennial international meeting embodies what PHA is, does and means. PHA’s Conference is the only gathering in the world of its kind, designed to bring together adults and children with PH, their loved ones and the professionals who care for them to support and learn from one another in our collective fight against PH.
Registration opened today for the 2018 PHA International PH Conference and Scientific Sessions with early-bird registration rates. Early registration is particularly important for families affected by PH. Already challenged with the day-to-day practicality of living or caring for people with PH, we understand the special considerations presented with travel and the need to plan far in advance. Because this year’s Conference is June 28- July 1 in Orlando, Florida, we also know many families, especially those with children, will want to make it a part of their summer vacation plans. To help offset costs for patients who are in need of assistance, PHA is able to offer a limited number of scholarships to qualifying patients. Scholarship applications also opened today.
The theme of our 2018 Conference is PHinding Your Hope. We believe that people look for and find hope in many ways, and that you will be able to do this at our Conference. Please join me in congratulating Nicole Phillips who submitted it as part of our Community Conference theme contest. Nicole’s niece, Haylee, was diagnosed with PH in 2015 at age three. Every year since, Nicole has hosted community fundraisers to support the Robyn J. Barst Pediatric Research and Mentoring Fund and is busy developing her inaugural PHun Walk4Hay scheduled for May in Maryland Heights, Missouri.
Conference offers people with PH and their support network a variety of sessions — presented by people with PH, caregivers and health care professionals — that offer practical information and scientific data. This year, attendees will learn how personalized treatment and care enable patients to not only breathe, but live their best lives with PH while supporting one another through PHA support groups and fundraising events.
Conference is a draw for as many health care professionals as families of people living with PH. it is a part of what PHA does every day as we partner with volunteers who represent all in attendance – the patient and caregiver community, health care teams and researchers – to save, extend and improve lives through our support, resources and events like Conference. In fact, during Conference, those living with PH can make a direct contribution to bringing us closer to finding a cure by donating blood samples and speaking directly with researchers who are on site to collect primary data from the largest gathering of PH patients in the world. PHA will also feature a poster hall in conjunction with medical education activities built on cutting edge research in precision medicine and patient care.
Since last Conference, PHA has extended our reach to millions of people who are at risk for PH as well as those already diagnosed and their personal and professional care givers. These include those with all diseases associated with PH, including a long list of other chronic heart and lung diseases, lupus, scleroderma, sickle cell, liver disease, HIV and many more common and rare conditions. With input from the PH community, PHA has also worked to define our work based on four strategic programmatic focus areas – advocate for the PH community; catalyze research for a cure; empower patients and caregivers; and promote quality care – while ensuring financial resources to achieve our mission. Conference brings our amazing community together to provide four days for us to deliver programming that aligns with our mission so that all who attend are a part of advancing care for those living with PH.
Past attendees tell us one of the things that brings them back is the simple opportunity to connect with others who are familiar with their experience. This is as true for those living with the disease and their families as it is for professionals who provide PH care. I am sure Conference 2018 will continue to provide this opportunity and empower you as you are PHinding Your Hope!
I look forward to seeing you in Orlando. To learn more about Conference and to register now while early-bird fees apply, and to apply for a scholarship, please click here. I welcome your feedback at BradWongPHA@PHAssociation.org.