Tuesday, April 15, 2014

Patient Resources for Stress Awareness Month

“I have found that stress will aggravate my sickness and symptoms. Unfortunately, stress is a major factor in my life. Today, I am trying to minimize the amount of stress I feel and improve the way I handle it.”

April is Stress Awareness Month. Stress is a part of the human experience. It accompanies life changes, both happy and sad, from the excitement of planning a wedding to the devastation of losing a loved one. We all experience some levels of stress in our day-to-day lives.

However, when combined with a chronic illness like pulmonary hypertension, stress can be especially difficult to manage. Without proper attention, stress has the potential to take a toll on your physical health and quality of life.

Access resources for managing stress

Connect to Support by Telephone

Each month PHA offers several ways for patients, caregivers and parents to connect with each other by phone. From our monthly support calls to our Patient-to-Patient Support Line 800-748-7274, we are committed to providing opportunities for community members to join in conversation.

Learn more and connect

FDA Meeting Registration Deadline Just Two Weeks Away

On May 13, in White Oak, Md., the Food and Drug Administration will host an informal, “talk show” style meeting where PAH patients can share what it’s really like to live with pulmonary arterial hypertension. FDA will use this information when considering whether to approve PH drugs in the future.

Please help us make a better tomorrow for PAH patients by attending in person or listening in and submitting comments via webcast. Register by April 30.
  1. Register with FDA. Whether you are attending in person or by webcast, you must register on FDA’s website. All members of the PH community are welcome, but PAH patients and the parents of young patients will do the talking. 
  2. Claim your seat on the bus. For those who would prefer not to drive to the FDA campus, buses are available from pick up points in New York, Philadelphia and Maryland.
Don't miss out on this unique opportunity!

Questions? Contact Katie at 301-565-3004 x749.

Monday, April 14, 2014

Charity Sunshine Tillemann-Dick Featured in Nation Swell

"She had a choice: Abandon her career as an opera singer, or risk death. She’s still singing. Meet the amazing woman out to revolutionize organ donation in America."

Read the article

Faces of PH: Amy Long

“I am so thankful that I get to continue living my life the way I want to, continue going to school, and being relatively active (I walk for exercise). I am eternally hopeful that a cure is on the horizon.” – Amy Long

Read Amy's story

PH Group in Bosnia and Herzegovina Looking to Connect

Do you have a connection to PH in Bosnia or the Bosnian diaspora? Plucna hipertenzija- Bosna i Hercegovina is looking to connect with you! The more voices looking for affordable treatments for pulmonary in Bosnia, the further they can go.

Connect

Friday, April 11, 2014

Queda un mes para el Día Mundial de HP



“La declaración de un Día Mundial de esta enfermedad, supone un paso hacia adelante en la creación de una conciencia universal en torno a la importancia de encontrar una mejora en la calidad y la esperanza de vida de más de 25 millones de personas que la padecen en el mundo.” – Asociación Nacional de Hipertensión Pulmonar (España)

…Y que va a hacer tu organización? Cuéntanos a International@PHAssociation.org