The Pulmonary Hypertension Association (PHA)’s Nov. 4 Associated Conditions Partner Summit explored ways to improve the understanding of pulmonary hypertension (PH) and reduce barriers to diagnosis among at-risk groups.
In the inaugural five-hour summit, PHA staff and volunteers engaged with representatives from organizations that focus on conditions associated with PH.
“Coalition-building is crucial,” PHA Board of Trustees Chair Colleen Brunetti said to attendees of the virtual event. “The challenges we face as patients are universal.”
Those attending included staff, volunteers and patients from Cure HHT (hereditary hemorrhagic telangiectasia), Adult Congenital Heart Association, Scleroderma Foundation, Pulmonary Fibrosis Foundation, the Foundation for Sarcoidosis Research and the Cystic Fibrosis Foundation. People with those conditions have a greater risk of developing pulmonary hypertension.
Participants discussed ways to enhance understanding of PH through joint education and improve outcomes through collaborative awareness and advocacy activities.
Health care providers expressed the need to better understand the challenges to diagnosis through cross-training with PH clinicians.
Anna Hemnes, M.D., chair-elect of the PHA Scientific Leadership Council, provided an overview of the types of PH and related diagnostic tests along with treatment options. Representatives for industry sponsors Janssen Pharmaceuticals, United Therapeutics and CVS Specialty also attended. PHA plans to hold the event every year.