Board of Trustees Member ‘Out and About’

2021-12-14T12:27:14-05:00October 10th, 2019|

Pulmonary Hypertension Association (PHA) Board of Trustees member Nicole Creech participated last month in the Patient Symposium at Washington University in St. Louis, an accredited Pulmonary Hypertension Care Center (PHCC). Nicole, who has pulmonary hypertension (PH) and sickle cell disease, highlighted resources PHA has to offer the PH community, and encouraged newly diagnosed patients

PHA Launches Three New Facebook Groups to Support the PH Community

2021-12-14T10:23:39-05:00June 5th, 2019|

The Pulmonary Hypertension Association (PHA) has created three new Facebook groups to provide support for the pulmonary hypertension (PH) community! PHA’s Facebook groups provide members with a supportive space to share stories, updates, goals, worries and hopes, and ask questions and affirm others on their PH journeys. Members can share this information with others

PHA Community Helps Spread the Word About Organ Donation

2020-12-21T14:31:12-05:00April 25th, 2019|

National Donate Life Month is coming to a close and the Pulmonary Hypertension Association (PHA) thanks each of you for helping us spread far and wide the importance of organ donation. Through your active participation on social media, so far, our message has reached nearly 25,000 people on Facebook, made 9,922 impressions on Twitter,

PHA’s Community Helps Highlight Importance of Organ Donation

2020-12-21T14:31:16-05:00April 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

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

2020-12-21T14:31:16-05:00April 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

2020-12-21T14:29:50-05:00February 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

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

2020-12-21T14:28:57-05:00January 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

2020-12-21T14:28:59-05:00January 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

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

2020-12-21T14:29:00-05:00January 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