Patient/Family Led Sessions

Friday, June 17

What are Patient and Family-Led Sessions?

Patient/Family Led Sessions are break-out groups that allow pulmonary hypertension patients and their caregivers an opportunity to share their tips for managing the disease. They differ from Medically Led Sessions by having patients and family members (or caregivers) lead the panel discussions. These are practical discussion groups between the panelists and the attendees to help you improve your overall quality of life in spite of a PH diagnosis.

Life Hacks
Life goes on after diagnosis. PH patients and caregivers share their tips for conserving energy to get the most out of each day from making "me time" to simplifying daily tasks. Come learn a few tricks from the panel and share a few tricks of your own.

Making Choices
Choosing happiness is something that is possible to learn to do even with PH. Our panelists will help you learn to relieve the stress in your life and the life of your caregiver by sharing the techniques they use. They will help you understand how to move beyond the "grief" most of us experience when we or a family member are diagnosed with PH.

Insurance: a Maze or Amazing?
Insurance can either be incredibly confusing or a lifeline to PH patients, but very often it’s both. Our PHriends from Caring Voice Coalition bring their expertise to help you navigate.

Trains and Planes and Boats; Oh My!
Does the thought of traveling with PH seem overwhelming? Join our panelists to discuss how all types of travel — even travel abroad — can be safely navigated. Panelists will lead a discussion on travel, including having a plan of action in case of emergencies while away from home.

The Power of Partnership
How do caregivers renew themselves when exhausted? How can patients positively communicate their needs? Discuss with other patients and caregivers ideas and practices for a deeper trust and overall closeness. Ask questions and share your ideas and concerns with this inclusive panel who will enable us to learn how to give and receive better care.

Do You Think I'm Sexy?
Pump up the volume despite the challenges of pills, pumps and the dreaded oxygen tanks! Find confidence in dealing with new friends, new social situations, and even new romantic interests. Discuss with the panelists and other attendees what to tell, when to tell, and how to tell about your PH diagnosis.

Building Your Ark: How to Create Your Own Support System
Many medical professionals say that PH is a disease that cannot be managed by one person alone — so how do you find the support you deserve when it feels like it’s all on you? This session is for PHers living alone or without the privilege of willing and able support networks. Learn about communicating your needs to friends and family effectively and reaching out to others through church, support groups, online networks and PHA. You are not alone in this journey!

Working and Higher Education with PH
Find a way to continue working on a job or on a degree while keeping up your health. Our jobs and careers make up such a large part of our identity that few of us want to give them up — not to mention the need for income and access to health insurance. Hear how other PH patients manage to work or attend school. Join this discussion of workplace and educational rights and what you should or shouldn’t tell your employer and fellow employees.

Living a PHit Life
The constant quest to eat right, manage fluids and exercise well can get cumbersome and confusing. Your doctor will tell you what you need to do. Our panelists will lead a discussion on how to do it. Come discuss and share realistic tips and tricks on staying healthy while living with PH from other patients who have been there, too!

Doctor, Doctor. Gimme the News!
Do you find it difficult to talk to your doctor? Are there things you forget to ask during your visits? This session is all about preparing for your appointments, staying organized, and coordinating with healthcare providers from PH specialists to Primary Care and everything in between. Come discuss how to ask the right questions when you meet with your healthcare team!

Family Planning with PH
From surrogacy to adoption to fostering: When a woman in her childbearing years and her partner receive a diagnosis of PH, they also learn the difficult news that pregnancy in the setting of PH is dangerous and not recommended. Yet, many couples may still want to expand their family. In this session, panelists and attendees will discuss alternatives to high-risk pregnancies.

It's a Man's World
Men with pulmonary hypertension are in a minority that can be doubly isolating. Generally, men respond differently to a PH diagnosis than women. This session gives panelists and attendees the opportunity to discuss issues for men related to developing or maintaining relationships, job loss, and the changing role a chronic and often debilitating disease has on men. (This session is open to men with PH and to men who are primary caregivers to someone with PH.)

 

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2014 Highlights

Watch PHA's 2014 Conference Highlights Video to experience the excitement and energy surrounding PHA's 2014 International Pulmonary Hypertension Conference and Scientific Sessions, which took place in Indianapolis, Ind.

View 2014 Conference Highlight Video



PHA thanks the sponsors of the International PH Conference and Scientific Sessions:

Diamond:

Actelion Bayer Gilead

Platinum:

 

Silver:

Accredo Specialty Pharmacy Reata Pharmaceuticals United Therapeutics logo

Bronze:

SteadyMed Therapeutics

General:

Bellerophon TherapeuticsEiger BioPharmaceuticals


To support the International PH Conference and Scientific Sessions, please visit the sponsorship page.


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