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Washington, D.C.

Schedule of Events

On the Road On the Road Speaker On the Road Speaker

8:00 a.m. – 10:00 a.m.


8:00 a.m. – 9:30 a.m.

Continental Breakfast

8:30 a.m.

Kids’ Room & Patient Rest Stop open

9:00 a.m. – 10:00 a.m.

General Session #1: Official Opening and Welcome

  • PH 101: My PH is not the same as your PH: Understanding how types of PH differ

10:00 a.m. – 10:10 a.m.


10:10 a.m. – 11:00 a.m.

Support Group Sessions (Concurrent)

  • Caregivers: Support group for people who love someone with PH (Caregivers only, please)
  • Living with PH: Support group for PH patients of more than 3 years
  • Newly diagnosed: Support group for PH patients of less than 3 years
  • Parents: Support group for parents of children with PH
  • Scleroderma: Support group for people with PH associated with Scleroderma

11:00 a.m. – 11:30 a.m.

Coffee Break

11:30 a.m. – 12:20 p.m.

Medically Led Sessions #1 (Concurrent)

  • Communicating and advocating in a PH emergency
  • Healthy diet and lifestyle choices in PH: Managing your diuretics and fluids
  • Oxygen: How to manage it at home, at work and on the go
  • The unique challenges of having PH with connective tissue disease

12:20 p.m. – 12:35 p.m.


12:35 p.m. 1:25 p.m.

Medically Led Sessions #2 (Concurrent)

  • Advance care planning, palliative care and hospice
  • Finding insurance coverage and making it work
  • The important benefits of exercise and rehabilitation programs in PH
  • Special topics in the health of women with PH

1:25 p.m. – 2:35 p.m.

Networking lunch and Keynote presentation
Kids’ Room will close during lunch.

2:35 p.m. – 2:45 p.m.


2:45 p.m. – 3:35 p.m.

Patient & Family Led Sessions (Concurrent)

  • Caring for the Caregivers – Coping tips for caregivers who are stressed, overwhelmed and overworked (Caregivers only, please)
  • Filling your toolkit for the long-term battle: Improving your medical care from appointments to daily health practices
  • Living your best life – Coping tips for patients who are stressed, sad or struggling
  • Support Systems: Where do you go when your family and friends do not understand?

3:35 p.m. – 4:00 p.m.

Coffee Break

4:00 p.m. – 5:00 p.m.

General Session #2:

  • PH 202: Where we are, where we are going, and how do we get there?

5:00 p.m.

Program Concludes
Kids’ Room & Patient Rest Stop close




Actelion Pharmaceuticals US, Inc. Gilead Sciences, Inc.

Bayer HealthCare
United Therapeutics Corporation

This is a program of the PHA Medical Education Fund, made possible through educational grants from our supporters.


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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.