Tuesday, April 22, 2014

Sights and Attractions of Indianapolis

As you are registering to attend PHA’s 2014 International PH Conference in Indianapolis, you are probably wondering what makes Indy so special. Indianapolis is a thriving city and beautiful place to plan a family vacation or a singles retreat. We all know that Indianapolis is home to the NFL Indianapolis Colts, but the city has a variety of attractions for everyone! Don’t believe us? We spoke to the local Indianapolis PH Support Group members and asked for their top picks of attractions in the area.

Here’s what they had to say:

“I’m in Indy, and I highly recommend the museums: Eiteljorg Museum of American Indians and Western Art, Museum of Art, Conner Prairie Interactive History Park. And our Children's Museum is known as the best in the country. There’s also a great variety of arts and entertainment downtown and around Indy, too, for the young adult crowd.”

Natalie Tolley, PH Parent, Indianapolis, Ind.

“White River State Park is in downtown Indy and just across the street from the [Conference hotel] JW Marriott Indianapolis. The park has many acres with a beautiful zoo, museums, five memorials, world-renowned Imax theater, a beautiful canal with paddle boats, gondolas, bicycles, segway tours, fountains, and free summer concerts! We are also home to Circle Center Mall, a three-floor Simon mall with many great restaurants and stores. And all of this is within walking distance of the Marriott.”

Cindy Battiato, PH Caregiver, Indianapolis, Ind.

Other Sites to consider:
  • Indianapolis Motor Speedway
  • Indianapolis Zoo
  • NCAA Hall of Fame
  • Dallara IndyCar Factory
For more tips on planning your visit to Indianapolis this summer, visit our Conference website.

Posted by:

Brianah Lewis
Web Services Intern, PHA

Thursday, April 17, 2014

Throwback: PHA Roving Reporter Takes on 2012 Conference

Food. Fun. Friends. That sums up the exciting Patient and Family Meet-and-Greet from our 2012 Conference. PHA Roving Reporter, Nicole Northrop, took to our 2012 Conference Blog to describe the scene filled with tons to do and see!

Walking into the Crystal Ballroom at the Renaissance Orlando at SeaWorld®, one would see many booths, delicious food, eager people, and fun activities. These aspects are what made the Patient and Family Meet-and-Greet at PHA’s 10th International Conference so enjoyable. The many people crowded into the ballroom were sporting a paper carnation. Each carnation was a different color to represent the many regions in which these people live. Every person, patient, caregiver and medical professional alike, seemed to be enjoying Conference. The ballroom was filled with happy chattering with people they had met.

Read Nicole's full blog post from our 2012 Conference

Tuesday, April 15, 2014

PHCC: Raising the Quality of Care for All PH Patients

At PHA’s 2014 International PH Conference and Scientific Sessions in Indianapolis this June, patients, caregivers and medical professionals will have opportunities to learn and share additional information about the PHCC initiative. 
PHA is pleased to announce a new chapter in the diagnosis and management of pulmonary hypertension: the PHA-Accredited Pulmonary Hypertension Care Centers (PHCC) initiative. Since 2011, the PHA Scientific Leadership Council (SLC) and a subcommittee, led by Dr. Murali Chakinala and including more than 40 physicians, non-physician clinicians, patients and caregivers, have sought to develop a program to identify medical centers with special expertise in treating PH. The primary goal of this program is to raise the overall quality of care and outcomes in patients with this life-threatening disease. 

At PHA, we frequently receive inquiries from cardiologists and pulmonologists who are interested in treating PH but are unsure how to organize a robust PH program correctly and efficiently. We now have a resource to provide them! In the near future, medical centers treating pulmonary hypertension will be invited to apply to become a PHA-Accredited PH Care Center. Successful applicants will be placed into one of two levels of accreditation based on the depth of all resources available to the PH program. These levels will be defined as: 
  • PHA-Accredited Center of Comprehensive Care (CCC): a highly organized, full-time PH center that proficiently evaluates PH patients based on published evidence-based guidelines and provides expert treatment of patients with all of the FDA-approved therapies. CCCs also make important contributions to PH research and education
  • PHA-Accredited Regional Clinical Program (RCP): a regional PH Center that proficiently evaluates PH patients and provides expert treatment with all non-infused therapies. An RCP must collaborate with its regional CCCs by referring patients who may benefit from opportunities unavailable at the RCP, including the initiation of infused therapies and participation in clinical trials.
What Does the PHCC Initiative Mean to Me?
PHCC is meant to be another tool in your fight against PH. When fully implemented, PHCC will be a network of expert clinicians who you can either see directly or who your medical team can contact when optimizing your care. This includes a cohesive medical team, verification that diagnoses are made correctly and appropriate treatment started, as well as explicit institutional support for the pulmonary hypertension program.

View the full criteria list for Centers of Comprehensive Care and Regional Clinical Programs. Applications are expected to open and full site visits to begin in the second half of 2014, and we anticipate that it will be several years before all qualified and interested sites have an opportunity to be processed for accreditation.

Where Can I Go for More Information? 
  • Online: The PHCC website is regularly updated with more information on the initiative and what it means for you.
  • An upcoming webinar: Drs. Michael McGoon, Erika Berman-Rosenzweig and Murali Chakinala will lead a webinar on April 30, 2014, to discuss the PHCC initiative. There will be time for Q&A at the end. Register for this webinar now. If you are unable to join, a recording of the webinar will be placed in PHA Classroom. 
  • PHA's 2014 International PH Conference: During Conference in Indianapolis this June, we will have even more opportunities to share additional information about the PHCC. Register for Conference now.

Written by:
Michael Gray
, Director of Medical Services, PHA

Olivia Onyeador, PHCC Program Manager, PHA

Posted by:
Kristie Link
, Publications Intern, PHA