PHA’s Community Helps Highlight Importance of Organ Donation

2019-04-11T16:02:04+00:00 April 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

Support the Online PH Community — Volunteer to Moderate a PHA Facebook Group

2019-04-11T16:00:36+00:00 April 11th, 2019|

The Pulmonary Hypertension Association (PHA) currently hosts five specific Facebook groups for people living with PH. These groups provide members with a supportive space to share stories, updates, goals, worries and hopes, and ask questions and affirm others on their journeys. PHA hosts the following groups: Long Term Thrivers – for people living with

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

2019-02-28T23:05:19+00:00 February 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

CEO Update: Year of Hope Begins With New and Continuing Programs

2019-01-24T22:05:39+00:00 January 24th, 2019|

Dear PH Community, For me, January always is inspiring and energizing, in part because the new year represents hope, possibility and anticipation. I look forward to the year ahead and the chance to work with so many of our pulmonary hypertension (PH) community members and staff to realize the many goals we have set

Share Your Story to Build New PH Champions in Congress

2019-01-17T21:59:53+00:00 January 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

PHA’s Telephone Support Groups: Support Is Just a Call Away

2019-01-10T22:28:43+00:00 January 10th, 2019|

The Pulmonary Hypertension Association’s (PHA’s) telephone support groups offer connection, information and inspiration to community members wherever they are. Brian, the caregiver for his wife Charlotte, who has pulmonary hypertension (PH), never misses his monthly caregiver support group. Since it meets by phone, it is easier for him to maintain the perfect attendance record

Inside Pathlight, PHA’s Member Magazine

2019-01-10T22:40:24+00:00 January 10th, 2019|

Pathlight, the flagship magazine of the Pulmonary Hypertension Association, is published quarterly and sent to all members of PHA. Don’t miss the many interesting articles in the December 2018, Issue 4 magazine, including: “Living on Oxygen 24/7” Cover story: A progressive heart and lung disease and a PAH diagnosis isn’t stopping Alexis Trotter from

New Members Join 2018-20 Support Group Leader Advisory Board

2019-01-03T22:11:42+00:00 January 3rd, 2019|

The Pulmonary Hypertension Association (PHA) is pleased to announce the members of PHA's Support Group Leader Advisory Board for the 2018-2020 term: Lindsay Collins – new member Debra Hines – new member Mike Robinson – new member Evette Britton Nicole Creech Chooda Khanal Pat Ofori Tina Stiyer Doug Taylor The board, made up of

Colleen Brunetti: Reflections on the Power of Telling Your Story

2018-11-29T21:50:21+00:00 November 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