Wednesday, May 20, 2015

PHA Brings One-Day Regional Conferences to Patients and Families

When I came to PHA in 1999, one of the first things that struck me was the excitement and anticipation surrounding our International PH Conference. Given the amount of work to produce these very special events, the reason PHA hosts them every two years, instead of annually, also became clear. However, that 24-month gap led to a dream by Board members: someday PHA should produce annual regional conferences, events where people wouldn't have to travel as far to receive the valuable education and networking opportunities that such meetings offer. 

It took almost a decade but in 2009, PHA had grown to the point where we were able to make the dream a reality. The vehicle we created is PHA on the Road, the patient component of PHA’s Medical Education Program, and in this guest blog post from PHA staffers Jodi Holland and Megan Mallory, we share the exciting plans for PHA’s seventh year of PHA on the Road. We hope you will join us in one of our four destination cities.

PHA is hitting the road again this year when PHA on the Road: PH Patients and Families Education Forums visits Atlanta on June 20, Philadelphia on July 25, Phoenix on Oct. 3 and St. Louis on Oct. 10. PHA on the Road recognizes that the pulmonary hypertension patient is the heart of a larger PH community that makes support, connection, information and education available to anyone who needs it. Since the program’s inception in 2009, these free patient-focused educational forums have featured interactive presentations, general sessions, time to meet other patients and caregivers, and exhibits. Forum speakers are leading PH healthcare professionals from the local area.

As Sarah Wisdom, from Yuma, Ariz.,
who has a family member with PH, shares, “[The forum was] very informative and [provided] great information for our whole family.” Patient Rebecca Talob, from San Diego, Calif., agrees, adding that the healthcare professionals who sat on session panels “were great and explained things so they were understandable and useable.”

Many patients also appreciate the opportunity 
PHA on the Road offers for networking. For some, these forums are the only time they and their family meet other patients. “It was very encouraging to know we're not alone,” Sarah notes.

General Session Topics at the Forums May Include:

  • Diagnosis: How is PH Diagnosed?
  • PH Treatments: What are the Choices and Which One is Best for Me? 
  • Long-term Medical Management of PH
  • What is on the Horizon? Clinical Trials and Drug Development

Breakout Session Topics at the Forums May Include:

  • Emergency Situations
  • Exercise
  • Insurance Issues
  • Intimacy Issues
  • Nutrition
  • Pediatric PH
  • PH and Emotional Wellbeing
  • PH and Other Associated Conditions
  • Traveling with PH

To ensure that patients, caregivers and family members get the most out of PHA on the Road, the forums are offered free of charge and include lunch and a kids' room where qualified volunteers and staff keep an eye on children as they play games while their family members receive this invaluable information.

For more information about PHA on the Road or
 to register, visit, contact or call 301-565- 3004 x763.

PHA on the Road is a program of the PHA Medical Education Fund, made possible 
by unrestricted educational grants from Actelion Pharmaceuticals US (Diamond sponsor), Gilead Sciences (Platinum sponsor), and United Therapeutics and Bayer HealthCare (Gold sponsors).

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