ANNOUNCEMENT: Early-Bird Registration Extended to April 9

More than 500 PH community members have already registered for PHA’s 10th International PH Conference and Scientific Sessions, The Power of One: From a Kitchen Table to Around the World. We hope you will join them! If you haven’t registered yet, you can still take advantage of the early-bird discount of $25/person through Monday, April 9. Don’t miss out on this opportunity!

Register now

For questions about registration, please contact Registration@PHAssociation.org or 301-565-3004 x768.

Please note that the early-bird discount rate will not be extended past Monday, April 9.

What's in Store for Families of PH Kids

Posted by:
Michal Rachlin
PHA Kerry Bardorf Family Support Program Associate

“I will be taking my family to Orlando... There is no other venue at which a family dealing with pulmonary hypertension can receive the same kind of support, emotional connection and education.” – Christina Doak, Spring 2012 Pathlight (pictured below with family in 2006)

If a young person in your family has PH, we hope you’ll be joining Christina and her family at PHA’s International PH Conference. The Conference may be your only opportunity to meet other families like yours. PHA worked closely with our Parents Advisory Board to identify the best ways to maximize this opportunity for families of PH kids.

We are very excited to announce two new breakout sessions for parents this year:

NEW! Communication for a Healthy Family
Coping with PH can be stressful for everyone in the family. During this session we will cover  strategies for communicating about PH, and maintaining the relationships that PH impacts. These topics will include the spousal, parent-child, and sibling relationships.

NEW! School and PH
Balancing your child’s education with their health needs can mean facing challenging decisions. Join us for this discussion on schooling to learn how other parents approach these issues at different developmental stages.

Additional breakout sessions of interest to parents include:

• Coping as a Caregiver 
• PH Goes to College
• Communicating to Family and Friends about PH 
• Ask a Pediatrician – Parents Only (0-11 years)
• Ask a Pediatrician – Parents Only (12-18 years)
• New Medical Therapy for Children with PH
• Teeth, Bones and Other Surgical Problems for Kids with PH

Another addition for parents is our Parents’ Mixer. Remember how nice it was to hire a babysitter and go out with your friends? We’ve scheduled this Mixer to take place while the Kids’ Room is open, so you’re all set! Join other parents in the Parents' Mixer at Conference and unwind as you enjoy this adult-only event.

These are just a few of our newest opportunities for families. You can visit the Conference Pediatric Programming page for complete information on everything related to Conference programming for families of children with PH.

So Excited That They Registered First

Posted by:
Diane Greenhalgh
Conference blogger
a.k.a. PHA Director of Web Services 

Pam and Eric Olayos (pictured below) were the first people to register for Conference when registration opened up in January. Read below about Pam's Journey with pulmonary hypertension and what she's looking forward to at Conference.

How long has PH been in your life?
I was diagnosed just over two years ago. For approximately three years prior to that, like so many others, I had a series of misdiagnoses: asthma, bronchitis, pneumonia etc. My PAH was confirmed at the University of Chicago in mid-December 2009. By mid January, I started Flolan therapy.

Have you attended a PHA Conference before?
I attended my first conference in 2010 - just six months after my diagnosis. I was so impressed with absolutely everything about it. Having been recently diagnosed, I wanted to take it all in and learn as much as I could. My husband and I decided to each attend separate sessions and then compare notes afterwards. I was particularly impressed with the work being done in the research room. It was encouraging to see so much effort being put forth to try and find a cure for PH. I was honored to be a part of it.

What are you most looking forward to at the Conference coming up in Orlando in June?
Now that I have been living with PAH and Flolan for two years, I feel like I have a better understanding of which sessions to select and what questions to ask. I also look forward to connecting with others that I have "met" on the Discussion Boards. Once again, I plan to participate in the Research Room.

Nominate the Outstanding Patient, Caregiver or Medical Professional in Your Life

Posted by:
Sally Maddox
PH patient, Greater Atlanta Georgia Support Group Leader, PHA Board of Trustees member, 2012 PHA Conference Committee Awards Chair

Here is your opportunity to show some love to those that work hard in the PH community by nominating them for an Outstanding Member Award.

I have been to all PHA Conferences since they started in Stone Mountain, Ga., in 1994, and the Outstanding Member Awards have been a part of them for the majority of them. I first became involved with the awards when I was asked to present an award to Barbara Smith and her family many, many years ago. Barbara was a dear friend of mine that did so many things for the pulmonary hypertension community. In the early years, her entire family did registration at Conference. which is a huge undertaking from making sure that all the name tags were correct to registering people that just showed up to Conference the day it started.

Of course, there are many other stories about an outstanding Physician or Nurse. The list of those that have been presented the Outstanding Patient Award and Support Group Leader award reads like a Who's Who list in PHA history. Let's not forget our caregivers that fight this PH battle with us daily.

You can view the different categories and nominate someone through our online form in the Awards section.

The deadline to nominate is March 15, 2012 (Feb 29, 2012 for Outstanding Physician). Don't wait to nominate!

Rita Goes to Conference ... For 7th Time!

Posted by:
Diane Greenhalgh
Conference blogger
a.k.a. PHA Director of Web Services

This afternoon I interviewed Rita Orth, a pulmonary hypertension patient in California who has attended six PHA Conferences and is planning on attending her 7th in June. Rita is heavily involved with the PH community. She is:

• a support group leader in San Jose, Calif.,
• a PHA Patient-to-Patient Support Line volunteer,
• a member of PH Professional Network,
• a member of PHA's Board of Trustees,
• and a member of the Conference Committee working on organizing the Support Group Meetings.

Listen to the interview below about what Rita had to say about what Conference is like. In sum, "It's amazing!"

Affirming the Human Spirit

Posted by:
Rino Aldrighetti
PHA President

“Thank you for reminding me why I became a doctor.”

The first time I heard those words were in 2002 at PHA’s Fifth International Conference in Irvine, California. It was a striking statement from a globally recognized PH physician.

Read more on Rino's blog

Karen's First Conference

Posted by:
Karen Madison
PH patient, Lexington, S.C.

My name is Karen, and I am super excited about attending my first Conference. I was diagnosed in Oct. 2007 and was misdiagnosed for four years. I was at a total loss when they told me that PH is a rare incurable disease and didn't know what to ask or what to do. Several weeks after they diagnosed me they told me I also had lung cancer, which proved to be false.

I finally got on the computer and started looking up the programs our local hospitals offer in hopes of finding something to attend where I could learn more about this and not be alone in it. I found that Lexington Hospital did have a PH support group that met every other month. So I called the number listed, and my husband and I went to our first meeting. Doug Taylor is a wonderful leader, and the folks that come and speak to us are very informative. We have learned a lot and no longer feel like we're on our own.

I'm looking forward to learning more at the Conference and helping out with the research. I know there is still a lot to learn and things are changing all the time.

Thank you PHA for all the information that you send out to us.

And We’re Off… Conference Registration is Open!

Posted by:
Diane Greenhalgh
Conference blogger
a.k.a. PHA Director of Web Services

As the largest gathering of PH patients, caregivers, family and medical professionals, PHA’s biennial International PH Conference and Scientific Sessions is always the highlight of the PH community calendar. It is a kind of reunion where we all get together to catch up on the latest research and education, to network with others in the PH community, and to see PHriends or colleagues we only get to see in person every two years at this Conference. The Conference also attracts a good number of new PHers who may never have met another PH patient or caregiver before. For the first time, they know that they are not alone, that there is hope.

This year’s Conference will be taking place June 22-24 at the beautiful Renaissance Orlando at SeaWorld® in Orlando, Fla., the state where our community began with a meeting of four women around a kitchen table. That very kitchen table used by our founders will be at Conference, leading us to this year’s Conference theme… The Power of One: From a Kitchen Table to Around the World.

And from around the world they will come, as our Conference is truly an international meeting. Leading PH medical professionals from across the globe will be meeting about the latest in the PH field at our Scientific Sessions, June 21-22. For PH association leaders from other nations there will be a pre-Conference International Leaders’ Summit, June 21.  And we have three jam-packed days of education, networking, advocacy and research for everyone June 22-24!

I’m very excited about attending this year’s Conference! I’ve been to three so far and they keep getting better and better. My favorite part is the “Journeys” luncheon where three or so pairs of doctors and patients share the story of their PH journey together. The experience always evokes a mixture of tears and laughter.

So as far as I’m concerned the countdown clock on the Conference homepage can’t tick down fast enough. Our president Rino Aldrighetti loves those types of gadgets too, but the seconds ticking away make him a little nervous with all the things to be done. While there is a lot to do between now and then, it will all come together to be a life-changing weekend when we will learn a lot and have a great time doing it because of the PHriends we get to share it with.

I hope to see you for our 10th reunion at our 10th International PH Conference and Scientific Sessions. Registration is now open, so get started planning your trip today!

• Register for Conference
• Book your hotel at the PHA arranged rate
• Plan your travel