Thursday, October 30, 2014

Upcoming Webinar: Family Planning with Pulmonary Hypertension

When a woman in her childbearing years receives a diagnosis of pulmonary hypertension (PH), she also receives the difficult news that pregnancy in the setting of PH is extremely dangerous and not recommended.

On top of the emotions that come with such news, the complexities of managing birth control and PH come into play. Yet, many women may still like to have a family someday, even if traditional childbirth is not an option. Join us for this kick-off live e-learning event where we will highlight important aspects of PH and family planning – from birth control to adding to your family through adoption options – to help PH patients, families, and care providers begin to think about these important topics.

This webinar (to be held November 12, 2014 at 6:00 p.m. EST) will serve as a starting point for future sessions where we will be sharing a series of adoption success stories and offering a support forum for women facing PH and family planning.

 Presenters


Colleen Brunetti is a seven-year survivor of pulmonary hypertension and serves in a variety of leadership roles at PHA, including the Board of Trustees. This past year she and her family embarked on an adoption journey, still in process. They expect placement of a little girl from the foster system sometime this year.



Meredith E. Pugh, MD, MSCI is a pulmonologist and critical care physician at Vanderbilt University Medical Center (Nashville, TN). She practices in the Pulmonary Vascular Center at Vanderbilt, and is honored to care for patients with all types of pulmonary hypertension. She is active in clinical medicine, pulmonary hypertension clinical research, and medical education.

Wednesday, October 29, 2014

PH PSA to air in Times Square

PHAware PSA in Times Square! NASDAQ confirms they will project PHA's Pediatric Research PSA on their building @ 9:30 am on November 6th to Kick off PH Awareness Month and to celebrate the NYC Gala. It's the largest video screen in the world! #phaware  Learn More at PHAware.org

Tuesday, October 28, 2014

Upcoming Webinar: Clinical Trials: What Patients Should Know


Ever wondered what it’s like to participate in a clinical trial? Join us for this webinar to find out! Juliana Liu, RN, MSN, ANP-C, and Val Scott, RN, of Stanford University Medical Center will review the general phases and structure of clinical trials as well as the drug approval process. Everything patients should know about, consider and expect during a clinical trial will be covered during this November 18th webinar (1 p.m. EST). Register today.


Presenters:


Juliana received her MSN from the University of California, San Francisco. She has worked as the adult nurse practitioner at Stanford University Medical Center since 2002. She has served as interim chair of the Research and Publications Committee as well as mentor for the PH Professional Network, the allied health arm of the Pulmonary Hypertension Association. She is also a PH Care Center Review Committee member. She has presented on various topics around caring for the pulmonary hypertension patients both nationally and internationally.

Val Scott, RN was born in Scotland and received a Diploma of Nursing and an ICU certification from Glasgow Royal Infirmary in Glasgow, Scotland. She moved to the United States in 1997 and fell in love with California. After years of clinical nursing, including 10 years in critical care, she moved to clinical research in 1990. She has worked at Stanford coordinating pulmonary hypertension clinical trials since 1998.

Friday, October 24, 2014

Quarterly Young Adult Virtual Meet-Up on October 29

If you are between the ages of 18 and 40 and living with PH, please consider joining us for the quarterly Young Adult Virtual Meet-Up on October 29 at 7:30 p.m. EST. Register today!

Calling All Men Living with PH

We are hosting a men living with PH focus group on Wednesday, October 29 at 8 p.m. EST.  Please consider registering to  share your experiences and help us to improve programs and services.

Advocate with a Video Selfie!

On National PH Advocacy Day, Thursday, Nov. 13, help us flood the Facebook pages of Congress with a Still PHighting video message about fighting pulmonary hypertension and how they can help.

Get started now with our simple steps and script

Thursday, October 23, 2014

Medical Professionals: Webinar on How You Can Improve Patient Access to Treatment

Specialty Pharmacies: Strengthening the Team, Smoothing Out the Process
Thursday, Oct. 30
2 p.m. ET/11 a.m. PT 
Register now

Join us for a webinar on improving patient access to treatment. As a medical professional and patient advocate, you are invested in getting your pulmonary hypertension patients access to the therapies that are right for them. You have strategies for overcoming treatment access barriers created by insurers, but what happens when those barriers come from folks who are usually your allies – a patient’s specialty pharmacy?

During this webinar, you will learn how PHA and the Caring Voice Coalition have collaborated with industry to create a Specialty Feedback and Accountability Form, which can serve as a catalyst for change in the specialty pharmacy process.

You will also learn how to:
  • Alert specialty pharmacies to medication delays or other snags in your work with them and receive a prompt response
  • Empower patients to submit comments about the service they receive from their SPs
  • Help PHA, SPs and manufacturers understand best practices or trends taking place within or across SP