Thursday, May 31, 2012

A New Step in Collaborative Care: Patient Participation in Medically Led Session Panels

Posted by
Meghan Finney
PHA Patient Education Manager

PHA’s 10th International PH Conference and Scientific Sessions offers a great deal of education for patients and their family members. For many attendees, the Medically Led Sessions are a highlight of Conference. These sessions are concurrent educational sessions for patients and family members led by panels of medical professionals, and, for the first time ever, patients on select sessions.

This new, unique structure will serve as a true testament to the Conference feeling of collaboration and bringing together the PH community. This year, we’re excited that two sessions – Emergency Situations and Defensive Dining – include patient panelists who will bring their perspectives to the panel. We expect that this format will be successful and hope to increase the number of patient panelists involved in future Conferences.

This year, we also look forward to bringing together over 125 medical professionals to discuss 40 sessions on a variety of PH-related topics. These sessions will address a range of topics covering everything from general pulmonary hypertension information, to living with PH and pediatric issues.

Don’t worry if you can’t make it to all of the sessions. PHA is recording the Medically Led Sessions and will post them on PHA Classroom following Conference. 

Learn more about the Medically Led Sessions

Wednesday, May 30, 2012

Conference Information Goes Mobile!

Have you heard about the newest way to get your up-to-date Conference information? PHA’s 10th International PH Conference and Scientific Sessions Mobile Application is currently available to download for all phone platforms and even for PCs and Macs! But this isn’t just your average mobile app; the Conference Mobile App is a web-based app that works directly from your device’s web browser, which allows for easy updates on new information without all those insistent push notifications.

This app is your one-stop shop for everything you want to know about programming at Conference. It’s been recently updated with session listings and an abundant list of speakers for each session. You can chart your course for Conference using hotel and exhibit hall maps or pre-plan out your schedule by selecting your favorite sessions. You can even register for Conference via the app!

With constant event alerts and immediate connection to PHA’s Facebook, Twitter and YouTube pages, the Conference Mobile App is the best way to stay connected and in touch with everything Conference. So don’t delay, and download the Conference Mobile App today!

Please note that this is not a traditional native app and cannot be purchased through the iTunes store, Android Market or Blackberry App World. Instead, it is bookmarked directly from your device's Internet browser and will work with any device, including a laptop or desktop computer!

For directions on how to view and download the app please visit our Conference site.

Thursday, May 24, 2012

Live Education for Medical Professionals at PHA’s 10th International PH Conference

Posted by
Rebecca Kurikeshu, MPH
PHA Medical Outreach Program Associate

The medical programming at PHA’s 10th International PH Conference and Scientific Sessions promises to be an exceptional opportunity to bring the field’s top PH specialists together for education and networking. The Scientific Sessions program will bring together approximately 400 physicians, researchers, and allied health professionals with an interest in pulmonary vascular disease.  This year's topic, The Genetics of Pulmonary Hypertension, will feature PH experts sharing their knowledge of heredity in the field. Young investigators and seasoned PH professionals will participate in these sessions together, offering a unique opportunity for mentoring and growth in the field.

The programming begins on Thursday, June 21, with two educational dinner forums, one for members of PH Clinicians and Researchers (PHCR) and one for PH Professional Network (PHPN) members, focusing on important factors in PH care and scientific advancements in PH.

The Scientific Sessions program continues on Friday, June 22, with a full day of programming that will focus on this year’s theme, genetics. Esteemed speakers will lead sessions on topics ranging from PH and the BMPR2 pathway, to the role of microRNAs in PH. The day will also feature a robust presentation of abstract posters, and free-form panel discussions about the top abstracts. Medical professionals with all levels of experience are encouraged to attend the Scientific Sessions and review the posters.

While you’re here, we also invite you to take part in the PH Fundamentals: Continuing Education Sessions for Medical Professionals, which targets medical professionals interested in learning more about the basics of PH. These sessions will be held Friday through Sunday.

Physicians at the 10th International PH Conference and Scientific Sessions can receive a maximum of 15.0 AMA PRA Category 1 Credits, and nurses can receive a maximum of 15.0 contact hours of nurse CE credit.

For more information about Scientific Sessions, speakers, and topics, please visit our Scientific Sessions page.

For more information about PH Fundamentals, please visit our PH Fundamentals page.

Thursday, May 17, 2012

Tips for Traveling with PH

Planning to attend PHA’s 10th International PH Conference or a summer getaway? PH does not have to hinder your travel plans! This recording from our last Conference shares tips for traveling, including information on traveling with oxygen. Planning ahead can take the stress and what-ifs out of traveling with PH.

Listen to recording

Wednesday, May 16, 2012

Conference is Truly International -- Check Out Our Programming for Global Attendees

Posted by
Meghan Tammaro
PHA's International Services Manager

PHA’s International PH Conference and Scientific Sessions draw in an increasing number of participants from around the world each year, and PHA is pleased to offer programming specifically for global attendees. In 2010, PHA hosted the First International Leaders’ Summit for 23 PH association leaders from all over the world. The 10th International PH Conference and Scientific Sessions will feature the Second International Leaders’ Summit as well as many new programs for global patients, PH organization leaders and medical professionals.

The Second International Leaders’ Summit fits perfectly into the theme of this year’s Conference: “The Power of One: From a Kitchen Table to Around the World.” With over 55 PH organizations around the world, 25 associations will be represented at this year’s Summit with over 35 representatives in attendance! The goal of the Summit is for participants to gain information from one another, which they can use for the growth and development of their own organizations. Topics of discussions at the Summit will include Managing a Support Group, Psychosocial Resources, Patient Databases and Registries, Building Relationships with the Medical Community, Building Corporate Relationships, Building Patient Relationships, Public PH Awareness Campaigns, The Power of Patient Stories and Creating Change in Your Government. In addition, the Assistant Director for the Center for Public and Non-Profit Management at the University of Central Florida will speak to participants about Association Management and Growth.

While the Summit is the biggest program for global attendees at Conference, there are many more opportunities for the global community to come together. On Friday, June 22 two regional meetings will be held at 11:30 a.m. for attendees from Canada and for members of the Spanish speaking community. These meetings will be hosted by PHA Canada and the Sociedad Latina de HP. Also on June 22, the International Reception will be held from 6:00-7:00 p.m. in the Odyssey Room as a way to bring members of the global community together and to honor the first recipient of the International Physician Award, Dr. Julio Sandoval. Finally, on Saturday, June 23 the International Strategy Meeting will begin at 11:30 a.m. to bring together the international PH leader community after the excitement of the Summit.

Don’t forget to stop by the International booth in the Exhibit Hall to see all of the PH resources available worldwide and in many different languages! We look forward to seeing everyone at this event.

Learn more about international programming

Wednesday, May 9, 2012

PHA Recognizes Outstanding Members of the PH Community

Matacha Saul receiving the Julie Hendry Memorial
Scholarship Award in 2010
Conference is the perfect time to recognize the unique individuals in our community who go above and beyond to fight back against pulmonary hypertension.

Year after year, PHA is simply amazed by how much our community members do to support the fight against PH. From leading support groups, raising awareness and fundraising, to advocating for PH and reaching out to the media – there are a ton of ways to get involved with our common cause.

The 2012 winners are a group of dedicated and passionate patients, caregivers and medical professionals who are inspirational and exemplary members of our community!

Award recipients are nominated and selected by community members just like you. In no particular order, the 2012 winners are…

Julie Hendry Memorial Scholarship Award
Jaclyn Burdick

Outstanding Allied Health Professional
Mary Bartlett, RN

Outstanding PH Citizen
Jeanette Morrill

Outstanding Support Group Leader
Nicole Cooper

Outstanding Young PH Citizen
Sean Wyman

International Physician of the Year
Julio Sandoval Zárate, MD

Physician of the Year
Raymond L. Benza, MD, FACC, FAHA

Friends of the Family Awards:

Corporation of the Year
Pfizer, Inc.

Foundation of the Year
Jansen Family Foundation

We will honor these award winners at PHA’s 10th International PH Conference and Scientific Sessions in Orlando, Fla., June 22-24, 2012.

Read more about the 2012 award recipients and everything they’ve done to support PHA and the fight against PH.

Monday, May 7, 2012

Best Friends Coming to Conference Together & Modeling in Fashion Show

18-year-old Shannon O’Donnell is getting ready to attend her 3rd International PH Conference this June in Orlando. But this time around, her best friend of 8 years, Jen, will be by her side to experience the magic of the event! In this short video blog, Shannon & Jen talk about their friendship, and their plans to participate in the Saturday evening PH Fashion Show…they each show off an outfit they plan to model, too!

Make attending the PH Fashion Show part of your Conference experience! This event allows participants to use fashion to help the world see the individual, not the disease. The show kicks off Saturday, June 23, from 5:00 p.m. – 6:00 p.m.

Thursday, May 3, 2012

A Mother Shares Her Experiences as a Veteran of Four Conferences

by Christina Doak
PH Parent
Originally published in Spring 2012

PHA's 10th International PH Conference and Scientific Sessions in Orlando will be here before we know it. I’m sure parents are mulling over the decision to attend, but for me it is an easy decision. I will be taking my family to Orlando for my fifth Conference and their fourth. There is no other venue at which a family dealing with pulmonary hypertension can receive the same kind of support, emotional connection and education.

My family includes my husband, Jim, and our daughters, Katy, 13 years old, and Emily, 9. Katy was diagnosed with pulmonary hypertension in 2003, at the age of 4. In 2004 I went to the Conference by myself. It was a last-minute decision to attend, spurred by feelings of indecision about Katy’s medical care. Jim and I were considering putting Katy on IV Flolan(TM) but had no idea what this life change would mean for our family. At the end of the weekend, I left with feelings of hope, inspiration, optimism and confidence that I could make good decisions for Katy’s care. It was such a unique experience that I couldn’t wait for 2006 to take my whole family to the next Conference. You ask why?

There are several major reasons, the first being its educational value. I learn so much from the medical professionals. These professionals specialize in PH and are amazingly dedicated to their patients. They commit this weekend to sharing their knowledge with us. PHA gives structure to this education through scheduled topics and sessions, research posters, and the Exhibition Hall.

Everyone is friendly, compassionate and willing to share their experience and knowledge with you. Not only do you learn from the PH medical teams during the Medically Led Sessions, but during meals, in the hallways, and while attending the Patient/Family Led Sessions. You spend the weekend getting all your questions answered, not by one doctor, but by many. And for me, in my fight to help Katy battle PH, knowledge is power.

Another very important reason that I continue to return to PHA’s International PH Conference is the emotional support my family and I receive from the PH community. Parents of children with PH often struggle with a sense of isolation. PHA makes an amazing effort to provide opportunities for families to connect. Katy gets to spend the weekend with other kids who have PH, my husband and I get to know parents who share the same challenges and Emily gets to have fun with other siblings and PH patients. There is really nothing I can imagine that is more cathartic.

At Conference, parents get to share with each other how we handle school situations, exercise or sports, social situations, and how we communicate to our families about this awful disease. PHA provides many opportunities for us to share: the pre-conference meet-ups, the Patient/Family Led sessions, the support groups, socializing at the Parents' Mixer (new this year), meals and after-Conference hours in the hotel lounge.

Our kids get to find support through many avenues as well. The Kids’ Room includes activities for kids of all ages: crafts, video games, live entertainment and — new this year — a creative expression workshop. A field trip for kids and teens is provided (monitored by a nurse, of course). PHA provides youth learning opportunities and support groups. But mostly, the kids and teens socialize and have fun, both during Conference hours and into the night. And this, I think, is the most healing experience for them.

Finally, I want to share a few of my favorite Conference activities. I don’t ever miss the "Journeys" Luncheon in which patients and their doctors share amazing stories of inspiration and hope (bring a tissue). The fashion show is always standing room only. PH patients, including our friends and family, get to show off how they make their medical accessories a fashion statement! And most importantly, the friends I have made over the years continue to draw me back.

So despite being a nine-year veteran parent of a PH patient, I continue to attend PHA’s International PH Conference. And every time I learn more, find continued hope and inspiration, and feel renewed to face the challenges of the upcoming two years until the next Conference.