Washington, D.C. (Apr. 27, 2023) – The Pulmonary Hypertension Association (PHA)’s free daylong, regional event for people affected by pulmonary hypertension (PH) is coming to Boston, Massachusetts this summer. The PHA Connects: PH Community Workshop will bring local medical experts and members of the PH community to the Boston Marriott Burlington hotel on Saturday, July 29 for a day of education, support and networking.
Co-chaired by Mary P. Mullen, M.D., Ph.D., of Boston Children’s Hospital and Eileen Harder, M.D., of Brigham and Women’s Hospital, the PH Community Workshop in Boston will continue the mission of bringing PH awareness directly to local communities.
“The landscape of the PH field is rapidly changing. There has been major restructuring of disease definitions, expansion in diagnostic methods and major breakthroughs in treatment options. Such advances are the result of many factors including an incredibly collaborative relationship between health care providers, researchers, patients and their families,” says Dr. Harder.
“PHA has played a critical role in this connection by linking patients and clinicians, advocating, raising awareness and educating those on all sides,” Dr. Harder explained. “PHA has worked to create a community with the shared and ultimate goal of finding a cure for PH. This Workshop exemplifies this collaboration and is a unique opportunity to discuss advances in PH, understand both patient and clinician experiences, and share knowledge about living and coping with this disease. It is a privilege to be serving as a co-chair and to meet those attending in Boston in July.”
PH means high blood pressure in the lungs, and it’s a complex, rare disease that affects people of all ages and ethnic backgrounds. The disease is significantly underdiagnosed and misunderstood, even among health care providers. Symptoms, including shortness of breath, fatigue and chest pain, are not necessarily specific to PH and can lead to dangerous delays in a correct diagnosis. While PH is incurable, early diagnosis and proper treatment can extend and improve an individual’s quality of life. Advances in treatment and a better understanding of PH have led to effective therapies, better quality of life and improved survival for many types of PH after diagnosis.
Speakers include health care professionals, people with PH and caregivers. Participants will have the opportunity to attend engaging sessions on topics such as navigating diagnosis and treatment, how to manage childhood onset PH, living with PH (adult and childhood onset) and advances in PH research. The event offers an invaluable opportunity to learn more about PH, discover PHA resources and meet other patients, families and caregivers.
Lunch and free parking will be available onsite. A professionally staffed kids room will be available for all children and teens ages three to 17 attending the Workshop.
For more information and to register, visit PHAssociation.org/Events/PH-Community-Workshop-Boston.
Members of the media are welcome to attend. To RSVP, please email communications@phassociation.org. Interviews with experts and others can be arranged upon request.
About the Pulmonary Hypertension Association
Headquartered in Washington D.C., the Pulmonary Hypertension Association (PHA) is the oldest and largest nonprofit patient association dedicated to the pulmonary hypertension (PH) community. Pulmonary hypertension is a rare, chronic and life-threatening disease of the lungs for which no cure currently exists. PHA’s mission is to extend and improve the lives of those affected by PH. To achieve this mission, PHA engages people with PH and their families, caregivers, health care providers, and researchers worldwide who work together to advocate for the PH community, provide support to patients, caregivers and families, offer up- to-date education and information on PH, improve quality patient care, and fund and promote research. For more information, visit PHAssociation.org and connect with PHA on Twitter, LinkedIn, Instagram and Facebook.
