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PH Ready Caregivers

A curriculum for family members and friends of newly diagnosed PH patients

If 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.

The Newly Diagnosed Self-Study: PH Ready Caregivers 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. The curriculum begins with two live webinars in July, and culminates in a live Question-and-Answer session in January. Have questions along the way? Contact a PH Email Mentor

Register now

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

Getting Started
 
Newly Diagnosed? What You Need to Know
Voice and Slides

  Newly Diagnosed? What You Need to Know
7/30/13
Presenter:
-Jean Elwing, MD, FCCP 
PH Caregiving 101
Voice and Slides
 

PH Caregiving 101
7/24/13
Presenter:
-Valerie Schacter Cappello, MSW, LCSW, CCTSW, Newark Beth Israel Medical Center

     
Communication as a Caregiver  
Everyday Advocacy for Caregivers
Voice and Slides

  Advocating in Everyday Situations
3/20/13
Presenter:
-Allyson Rupp, LCSW, Vera M. Wall Center for Pulmonary Vascular Diseases
When People Just Don't Understand PH
Audio
  When People Just Don't Understand PH
2010 International PH Conference session
6/25/10

Presenters:
-Amanda Harvey-McKee
-Sheree Rickman
-Marcia Beverly
   

  
Take the Caregiving Self-Quiz

Managing Healthcare  
Empowered Patient: Nurturing Partnerships with your Medical Professionals to Get the Best Care Possible
Voice 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

Insurance Issues
Voice and Slides
  Insurance Issues and Alternative Means for Getting Treatment Covered
6/18/11
Presenters:
-Lillian Bauman, LICSW, University of Minnesota Medical Center, Fairview, Minneapolis, Minn.  
-Kathleen Henderson, Accredo Health Group, Inc., Warrendale, Penn.
     
Take the Managing Healthcare Self-Quiz

 
Emergencies   
Emergency Situations
Video
  Emergency Situations and Primary Care Issues
2010 International PH Conference session 6/26/10
Presenters:
-Michael McGoon, MD, Mayo Clinic, Rochester, Minn. (chair) 
-Louise Durst, RN, Mayo Clinic, Rochester, Minn.
-Namita Sood, MD, FCCP, The Ohio State University, Columbus, Ohio
-James White, MD, PhD, University of Rochester, Rochester, N.Y.

Side Effects of PH Medications
Voice and Slides
 

Side Effects of PH Medications
9/28/10
Presenter:
-Karen Fagan, MD, [hospital] 

     
Take the Emergencies Self-Quiz

 
Care for the Caregiver   
A Caregiver's Toolbox
Voice and Slides
  My Loved One Has PH: A Caregiver's Toolbox
7/13/10
Presenter:
-Mary Bartlett, MS, RN, CS, FNP
Care for the Caregiver
Audio
  Care for the Caregiver
2010 International PH Conference session 6/25/10
Presenters:
-Evan White
-Barbara Warren
-Mary Jo Taylor
-David Morrill
   

 
Take the Care for the Caregiver Self-Quiz

Depression and Coping   
Recognizing and Coping with Depression
Voice and slides

  Recognizing and Coping with Depression
3/21/13
Presenters:
-Ginny Maril, PhD Candidate, Counseling Psychology, Texas Women's University

Power of Choice 
Voice and slides
  Power of Choice: Living a Fulfilling Life with a Chronic Illness
2010 International PH Conference session 6/25/10
Presenters:
-Hannah Lahmeyer    
-Leslie Polss    
-Teresa Wilson
   

 
Take the Depression and Coping Self-Quiz

 
>>More resources for family members of PH 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.

 

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

Support is an email away

Patient Mentor

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

Contact a PH Email Mentor

PHA Classroom News Feed

Receive announcements when a new live e-learning event is scheduled or class recording posted to the PHA Classroom.

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

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.