Pulmonary Hypertension Association To Highlight 25 Years of Achievements at This Year’s PHA Conference

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

Share this article:

Share article via email

The Pulmonary Hypertension Association (PHA) is celebrating its 25th birthday in 2016 by highlighting major Pulmonary Hypertension treatment advances made over the past two decades, in order to encourage those with PH to remain hopeful for the development of future therapeutic advancements that will improve quality of life and lifespan.

To mark the occasion, the association expects over 2,000 attendees to attend this year’s PHA International PH Conference and Scientific Sessions Conference, which will be held June 17-19, 2016 in Dallas, Texas. This year, the PHA is renewing its commitment to supporting the country’s community of PH patients, caregivers, families, medical professionals, and researchers.

Sometimes referred to as “the other high blood pressure,” PH is an increase in blood pressure in the blood vessels of the lungs that over-stress the right side of the heart, which can lead to heart failure. With symptoms including fatigue, dyspnea, and chest pain, patients lose priceless time if they’re misdiagnosed with asthma and other illnesses, delaying an accurate diagnosis. In addition, there are a number of other diseases associated with PH, such as scleroderma, lupus, HIV or sickle cell anemia, which further complicate treatment and negative impact patient health.

The PHA was founded by three PH patients and a caregiver in 1991. Since then, the organization has contributed to significant progress over the past two decades in the treatment of PH. As the first organization in the world dedicated to providing comprehensive patient and caregiver support, education, specialty care and research, the PHA has supported:

  • 14 FDA-approved PH treatments (there were none in 1991);
  • More than $17 million granted for PH research;
  • More than 24 Pulmonary Hypertension Care Centers (PHCCs) with completed PHA accreditation processes;
  • A four-star rating — the highest possible — for fiscal accountability and transparency from Charity Navigator, ranking in the top half 1% of all rate charities for 12 consecutive years;
  • A successful awareness raising campaign, called ‘Heart2CurePH’ with the tagline “At PHA, we’re putting our heart into finding a cure,” including print ads, billboards, digital ads, public transit advertising, and TV public service announcements;
  • Advances in Pulmonary Hypertension, The Official Journal of the Pulmonary Hypertension Association, the quarterly publication that brought PHA to the center stage as the central source of information about PH, reaching more than 40,000 rheumatologists, cardiologists, and pulmonologists with licensed editions in Spain and India;
  • The publication of the organization’s Pathlight now reaching over 10,000 patients, caregivers and medical professional members, and supporters;
  • The PHA launched myPHA, a social network begun in April 2015 that currently engages over 1,100 users and PH patients.

“PHA, which serves as a model for more than 80 international PH organizations, represents a community of patients, caregivers, healthcare professionals and scientists who are guided by PHA’s mission,” commented PHA’s President and CEO, Rino Aldrighetti, in a press release. “In a little more than two decades, as a team of patients, caregivers, clinicians, researchers, fundraisers and volunteers, PHA has led the way for progress in the areas of patient care, public awareness and PH research.”

A Conversation With Rare Disease Advocates