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Newly Diagnosed Patients

The Newly Diagnosed Self-Study: PH Ready

If you or someone close to you has recently been diagnosed with pulmonary hypertension (PH), you probably have a lot of questions and concerns. Or, you may be feeling so overwhelmed by the diagnosis that you aren't sure what kinds of questions to ask. PHA has created The Newly Diagnosed Self-Study: PH Ready, a series of e-courses that serve as a roadmap for newly diagnosed PH patients. It is full of information about treatments, living with PH, insurance, working with your medical team and more. Participants will receive a monthly email highlighting relevant resources for newly diagnosed patients. While PH Ready can be started at any time, the curriculum is intended to begin with the live Newly Diagnosed? What You Need to Know webinar in January or July and conclude with a live wrap-up webinar in July or January.
 
PH Ready is a curriculum intended for newly diagnosed patients. PH Ready, Caregivers is intended as a companion curriculum for caregivers of newly diagnosed patients.

Register now

Here are some recommended recordings to help you begin learning about PH right away.

2010 International PH Conference session -indicates PHA 2010 International PH Conference session
 -indicates Minneapolis PHA on the Road session

Living with PH     
Voice and Slides  

Don’t Panic! – A Patient’s Guide to Understanding and Dealing with PH
7/17/14
Presenter
-Vinicio de Jesus Perez, MD, Stanford University School of Medicine

Take the Living with PH Self-Test!

Emergency VehicleVoice and Slides  

When Urgent or Emergent Situations Arise: What Should I Do?
2/8/14
Presenter:

-Wendy Hill, MSN, RN, NP-C, West Los Angeles VA Medical Center

Understanding PH: The Basics Voice and Slides   Understanding PH: The Basics
2010 International PH Conference session 6/26/10
Presenters:
-Dana McGlothlin, MD, University of California San Francisco, Chair
-John Newman, MD, Vanderbilt University
-Arlene Schiro, MA, CS, NP, Brigham and Women's Hospital
     
Insurance    
Lillian Bauman & Kathleen HendersonVideo and Slides  

Insurances Issues and Alternative Means for Getting Treatment Covered
 6/18/11
Presenters:
-Lillian Bauman, LICSW, University of Minnesota Medical Center, Fairview
-Kathleen Henderson, Accredo Health Group, Inc.

Take the Insurance Self-Test!

     
Treatment    
James R. Flink, MDVideo and Slides

Initial PAH Treatment: What Are the Choices and Which One is Best for Me?
 6/18/11
Presenter:
-James R. Flink, MD, St. Paul Lung Clinic

 Take the Treatments Self-Test!

     
Your Care Team    
Empowered Patient: Nurturing Partnerships with your Medical Professionals to Get the Best Care PossibleVoice and Slides  

The Empowered Patient: Nurturing Partnerships with your Medical Professionals to Get the Best Care Possible
1/26/11
Presenter:
-Deborah Levine, MD, University of Texas Health Science Center at San Antonio

Take the Empowered Patient Self-Test!

     
 Coping    
Lifestyle Modifications for Improved Quality of LifeVoice and Slides   Lifestyle Modifications for Improved Quality of Life
1/27/10
Presenter:
-Janet Pinson, NP, Virginia Commonwealth University
Telling Your Story: Explaining PH to Friends, Family and CoworkersVoice and Slides  

Telling Your Story: Explaining PH to Friends, Family and Coworkers
9/1/11
Presenters:
-Amanda Harvey-McKee
-Brit Riggins

Take the Coping Self-Test!

All done with the curriculum? Evaluate your knowledge with this presentation. Dr Jean Elwing reviews important points from her webinar and shares tips to help you better cope with and manage your PH.


Voice and Slides

 

Newly Diagnosed: PH Ready and PH Ready Caregivers Wrap-Up
1/21/14
Presenter:
-Jean Elwing, MD, FCCP, University of Cincinnati


>>More resources for newly diagnosed patients 

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Actelion Pharmaceuticals US, Inc. Gilead Sciences, Inc. United Therapeutics Corporation Bayer HealthCare
This is a program of the PHA Medical Education Fund, made possible through unrestricted educational grants from our supporters.

 

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Patient Mentor

Our team of mentors is standing by for patients looking for one-on-one, email-based support.

Contact a PH Email Mentor

Empowered Patient Online Tookit

The Empowered Patient Online Toolkit can help you track medication dosages, pharmacy numbers, insurance plans and more with resources to create your own PH-specific medical binder.

Download the Empowered Patient Online Toolkit

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.