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
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
Meet up with Pulmonary Hypertension Association (PHA) staff as we head out across the nation with information and resources to help people living with conditions which may put them at increased risk of developing PH. PHA is committed to doing outreach and education so people with associated conditions know what to look out for,
The Pulmonary Hypertension Association (PHA) will host the inaugural Northern Virginia Walk on Saturday, May 4, in Alexandria, Va. The walk offers an opportunity for patients, caregivers, friends, family and medical professionals to gather for a common goal: raising funds to help support those affected by pulmonary hypertension (PH) and ultimately find a cure.
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
Advocates across the U.S. are participating in free state advocacy events now through mid-March in collaboration with the National Organization for Rare Disorders (NORD) to celebrate Rare Disease Day Feb. 28. Rare Disease Day is celebrated each year on the last day of February, a month known for having a rare number of days.
Two families offered a match for this week’s 2018 Giving Tuesday campaign, helping boost the Pulmonary Hypertension Association’s (PHA) total donations to a record-breaking $61,882 for the annual giving event. The Doerge and Blesi families, who were first touched by pulmonary hypertension (PH) when daughter Zoe Doerge was diagnosed, offered a $17,000 match in
The Pulmonary Hypertension Association’s (PHA’s) The Right Heart campaign delivered a big impact during Pulmonary Hypertension Awareness Month, thanks to the efforts of the PH community. With the help of individuals with PH, families, caregivers, volunteers and health care providers, PHA raised awareness of PH in many ways, including special events and support group
U.S. Rep. Jamie Raskin (D-MD), submitted remarks earlier this month recognizing November as Pulmonary Hypertension Awareness Month. His full comments, included below, informed Congress about the severity of pulmonary hypertension and the importance of prompt diagnosis, effective treatment and a cure. HON. JAMIE RASKIN of Maryland in the house of representatives Friday, November 16,
“It's always tough to say no to events or be unable to do things because a “bad day” is too hard to overcome. Doing small day to day things to help lessen their frequency is important.” “Burning the candle at both ends can be challenging for patients with pulmonary hypertension. Days when