PHA Joins NHLBI in Celebrating 50 Years of Progress in Pulmonary Science

2019-04-18T16:41:26+00:00April 18th, 2019|

The National Heart, Lung, and Blood Institute’s (NHLBI’s) Division of Lung Diseases celebrated its 50th anniversary April 9 with an NIH Symposium on lung research followed by a reception at the Rayburn House Office Building on Capitol Hill, Washington, D.C. The anniversary’s theme is “Celebrating 50 Years of Progress in Pulmonary Science.” Staff from

Make an Impact on the Hill and Attend Our First-Ever Symposium Trivia Night

2019-04-18T16:42:37+00:00April 18th, 2019|

Health care professionals can register today for the Pulmonary Hypertension Association’s (PHA’s) 2019 PH Professional Network (PHPN) Symposium Sept. 5-7 in Washington, D.C., and take advantage of their proximity to Capitol Hill during Advocacy Day on Sept. 5. Nurses, respiratory therapists and physicians can advocate for their patients and their practice in facilitated, small

Openings Still Available for Webinar Participation in FDA Meeting to Gather Input on Living With a Rare Disease

2019-04-11T15:59:10+00:00April 11th, 2019|

The U.S. Food and Drug Administration (FDA) reports that the in-person registration for their April 29 public meeting “Patient Perspectives on the Impact of Rare Diseases” is full. However, interested persons can still register to attend via webcast. In addition, the FDA invites those interested in attending in-person to join the waitlist. The FDA

PHA’s Community Helps Highlight Importance of Organ Donation

2019-04-11T16:02:04+00:00April 11th, 2019|

National Donate Life Month continues to celebrate the capacity we all possess to give life and hope by registering to become an organ donor. Every ten minutes, someone is added to the National Transplant Registry. Depending on the availability of necessary organs, wait times for patients on the list can be anywhere from days

CEO Update: Rare Disease Day Plays Important Role in Increased PH Awareness

2019-02-28T23:05:19+00:00February 28th, 2019|

Dear PH Community, The last day of February — whether it is the 28th or the 29th in a leap year —  is special since it is recognized internationally as Rare Disease Day. Each year, the Pulmonary Hypertension Association (PHA) is an active participant in this important global awareness campaign. Today PHA proudly partners

Share Your Story to Build New PH Champions in Congress

2019-01-17T21:59:53+00:00January 17th, 2019|

The government shutdown does not stop pulmonary hypertension (PH) advocacy. In fact, the nearly 100 new senators and representatives sworn into office at the beginning of the month represent an advocacy opportunity since many of them are probably not familiar with PH. Compelling personal stories from constituents are all it takes to turn members

WSPH Report Explores Importance of Patient Perspectives in PH

2019-01-03T22:09:49+00:00January 3rd, 2019|

In early 2018, a task force on the patient’s perspective was created at the sixth World Symposium on Pulmonary Hypertension (WSPH). This task force reviewed the role of patient associations such as the Pulmonary Hypertension Association (PHA) in supporting individuals with PH, examined how clinical teams can improve care and looked at improved access to

Colleen Brunetti: Reflections on the Power of Telling Your Story

2018-11-29T21:50:21+00:00November 29th, 2018|

My name is Colleen Brunetti, and I am your Pulmonary Hypertension Association (PHA) Board of Trustees chair-elect. I’m the first patient to serve in this volunteer position in many years, and the enormity of that honor does not escape me. Truly, at PHA, we stand on the shoulders of great leaders who have come

CTEPH Awareness Day Campaign Increases Overall PH Recognition

2018-11-16T23:14:53+00:00November 16th, 2018|

The Pulmonary Hypertension Association (PHA) recognized Wednesday, Nov. 14, as CTEPH Awareness Day and responses show an eagerness to learn about chronic thromboembolic pulmonary hypertension (CTEPH). Social media graphics and messages were shared widely, creating an aura of enthusiasm around the day. PHA fed the excitement by providing a myriad of ways to engage and