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
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
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
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
“Throughout my journey I have found that there is not enough awareness about PH and CTEPH. So, I have made it a personal mission to help raise awareness so that through early detection and intervention, lives can be saved.” – Angela Michelle By: Angela Michelle “My name is Angela Michelle and I’m from
Pulmonary Hypertension Association establishes November 14 as CTEPH Awareness Day Silver Spring, MD (November 14, 2018) – In order to help raise awareness and improve diagnosis of a rare form of pulmonary hypertension (PH), the Pulmonary Hypertension Association has established November 14 as Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Awareness Day. Symptoms—including shortness of breath, fatigue
In fulfilling our mission at the Pulmonary Hypertension Association (PHA) to extend and improve the lives of those affected by pulmonary hypertension (PH), awareness is key. Although most of us did not know much, if anything, about PH until we were affected personally as a patient, family member or friend, we know now that
Proclamations – statements encouraging people to take note of a particular person, place or time of year – are a popular way for elected officials to recognize issues that are important to their constituents. Proclamations can be issued by officials at any level of government, including city council members, governors and members of Congress.
Recently, Kerry Babylon, an adult with pulmonary hypertension (PH) and Silver Spring, Md., PHA support group leader, visited the Rockville, Md., district office of U.S. Rep. Jamie Raskin (D-Md.). During the meeting, Kerry asked that he co-sponsor H.R. 3976, a bill supported by the Pulmonary Hypertension Association (PHA) to protect access to charitable assistance.
by Phyllis Hanlon, Contributing Writer Although there are 14 different Food and Drug Administration (FDA)-approved therapies for treating World Health Organization (WHO) Group 1 pulmonary hypertension (PH) (pulmonary arterial hypertension, or PAH), there remains a need for treatments that can be used across varying classifications of PH. In 2017, the Critical Care Medicine Department of
