World PH Day... and Beyond

Today’s blog was co-written by PHA staffers Megan Mallory and Renee Hockaday. They make the point that awareness doesn’t begin and end on World PH Day. It is an everyday necessity if we are to succeed in our efforts to achieve better lives for PH patients and all those living and working with this disease.

Yesterday, on May 5, pulmonary hypertension patients and their loved ones asked their social media friends around the world to join their fight against a life-threatening disease too often dismissed as asthma. Our PH community did this to mark World Pulmonary Hypertension Day, and we joined in a global effort to educate people about PH and bring awareness to this disease.

The fight for awareness does not end after one day. If we are to succeed, awareness-building must continue today and every day. If you missed out on yesterday’s social media blitz, we ask you to join this awareness movement today.

We have designed a World PH Day celebration social media pin with the message, “PH: A disease of many stripes,” to symbolize the diagnostic challenges and how PH comes in different forms, sometimes without a known cause and in other cases, associated with other diseases. Please share this pin with your social media followers to lead them to PHAssociation.org to learn more about PH, find healthcare resources and/or make an online donation.

Please post this social media pin with the following messages on your website, Facebook, Twitter and other social media pages. Or if you want, create a message of your own. Here are our suggested messages:

Facebook:
Pulmonary hypertension may look like asthma. But on average, the survival rate for those untreated is 2.8 years. For World PH Day, share this message and World PH Day pin with 5 people you love. http://owl.li/LVTdB

Twitter:
World PH Day: the other May 5 celebration. http://owl.li/LVTdB @PHAssociation #PHAWorldPHDay #ILovePHA #PHAssociation

Did you know?

Yesterday also marked the beginning of PHA’s Days of Unity. Days of Unity are events and fundraisers hosted by individuals and organizations to raise money to fight PH. The events range from small walks hosted by PH patients to an endurance bike race fundraising effort led by Team PHenomenal Hope, which raised nearly $117,000 for PHA as participants in the endurance bike event Race Across America in 2014. Our 2015 Days of Unity events will conclude on June 20 after Team PHenomenal Hope completes its 860-mile Race Across the West from Oceanside, Calif., to Durango, Colo. Learn more and get involved

An Unexpected Gift for Support Group Leaders

In honor of World PH Day, Pulmonary Hypertension Association support groups got a special delivery. Gerry Fischer, president of PHA Europe, donated books written by his daughter, PH patient Maleen Fischer, to support group leaders. Maleen's book,“Hope Springs Eternal,” is about her PHight with PH. On behalf of all of PHA support group leaders and members, PHA thanks Gerry and Maleen for this thoughtful donation!

The Fifth World PH Symposium...

The Fifth World PH Symposium
Feb. 27- March 1, 2013
At 1,200, a tripling in size from fhe Fourth Symposium
We are not alone! 

February 28 was Global Rare Disease Day.  On that day, I was struck by where I was and who I was with.  PH may be rare but it is not forgotten...

Let me start with a little history.

In 1973, a handful of physicians and researchers came together in Geneva, Switzerland for a first ever meeting to discuss pulmonary hypertension.  The driving force was a small case series on elevated pulmonary artery pressures in otherwise healthy young individuals in the 1950s and 1960s; and the epidemic of anorexigenic-associated (appeite suppressant-associated) PAH in Europe.  The meeting led to an improved classification for PH and – several years later, in 1980 – the NIH began a five year registry for PH, the first in the field.  Analysis from that registry became a backbone of research for more than the next two decades.

That important meeting in Geneva, known as the World Health Organization (WHO) Conference on Primary Pulmonary Hypertension, was planned as a one-time event.  However, a quarter of a centuy later, Dr. Stuart Rich and others argued for a second meeting.  It was held in Evian, France in 1998 and established the pattern of meetings every five years…with meetings held in 2003 (Venice, Italy), 2008 (Dana Point, California) and 2013, last week (Nice, France).

Each meeting has grown.  Each has systematically strengthened how physicians and researchers across the world can work with common understanding for more rapid progress in the field.



The PHA and PHA Europe exhibits, side by side: Dr. Alma Rubio,
Pisana Ferrari (VP of PHA Europe), Gerry Fischer (President of
PHA Europe), Carl Hicks (VP of PHA), Melanie Gallant-Dewavrin
(President of HTAP France),
Hall Skaara of PHA Norway, Noriko Murakami of PHA Japan
and Yosef Gotlieb of PHA Israel are not pictured.
(Rino was behind the camera.)
 

The first meeting I attended was the Fourth World PH Symposium in Dana Point in 2008.  It was exciting then to see 400 physicians and researchers from around the world plan together.  Coming to Nice last week, the view was astonishing.  In five years the meeting had grown to 1,200 attendees.

It was a good feeling to hear Dr. Gerald Simmoneau open the Fifth World Symposium on the morning of February 27, speaking to the importance of the

patient associations across the world, specifically mentioning PHA and PHA Europe.

The Symposium Steering Committee was composed of five physicians from Europe and five from the U.S.   Seven of the Steering Committee members were current or past members of PHA’s Scientific Leadership Council, four having served as chairs of that body.

The work of the Symposium had been developed by twelve Task Forces:

1. Pathology & Pathobiology
2. Genetics & Genomic
3. Definitions & Classifications (and particularities of different PAH subgroups)
4. Pathophysiology (focusing on exercise and RV)
5. Epidemiology & Registries
6. Diagnosis & Prognosis
7. Therapy - Standard of Care
8. Therapy - Goals
9. New Trials Design & New Therapies
10. CTEPH
11. PH due to Left Heart Diseases and Chronic Lung Diseases
12. Pediatric PH

Over the course of three days each Task Force delivered their program, presenting the results of their work and their recommendations to the 1,200 participants.  In each case, the presentations were followed by discussion and debate. Many of the presenters asked questions and the audience used electronic response devices to vote their responses. It was a great process of involvement and the task Forces will be reviewing the audience response before finalizing their recommendations over the next several weeks.  Since this was the first time that a Pediatric Task Force was included, we are particularly interested in seeing their final report.



PHA's poster presented at the World
PH Symposium (primary author,
Dr. Sean Studer)

PHA and PHA Europe were provided with exhibit booths and it was so good to reconnect with our friends from PHA Europe as well as leaders from PHA Japan and PHA Israel.  Our International community continues to grow.  Melanie Gallant-Dewavrin, who I first met at PHA’s International Conference in 2000, told me that the HTAPFrance was founded in 1996 by Nicole Cabon after she attended PHA’s International conference in Stone Mountain, Georgia.  That was the third PH association in the world (the German PH association, PHeV, was founded shortly before).  Today there are over 60 (the Indian PH association website was just announced to the world PH community today!) 

We were pleased to have an opportunity to present our poster and study on patient depression and anxiety.  Since it came out after the European study, which PHA Europe also presented at the Symposium, we were able to include comparative data between the US and Europe in our material.

Last week was a great experience and the Fifth World PH Symposium is ended. Now we await the final reports but one thing is already very, very clear:  PH may be a rare disease but it no longer exists in a dark corner.  There is a spotlight shining on it and only good can come of that. 

Back & forth...& worth it

Sometimes, it's worth the jet lag...

I just got back from a four day trip to Barcelona, Spain...well, maybe a little less with the time in the air.  The itinerary included a presentation to the leaders of PHA Europe, work on a global survey of PH patient and caregiver depression and anxiety issues, getting to know a new company in the field and attendance at the European Respiratory Society Conference.

The PHA Europe Annual General Assembly was a thrill for me to attend.  I remember just a few years ago that this confederation was just an idea.  Now- in Castelldefels, a beautiful beach suburb of Barcelona - it is clear how far that idea has come.  Representatives from PH associations in Austria, Belgium, Bulgaria, the Czech Republic, France, Germany, Greece, Hungary, Ireland, Israel, Italy, the Netherlands, Norway, Poland, Portugal, Slovakia, Spain, Sweden, Turkey and Switzerland were meeting to discuss ways they can better work together and help each other grow.

Many of the leaders, including PHA Europe's president, Gerry Fischer (Austria), and Vice-President, Pisana Ferrari (Italy) and Melanie Gallant-Dewarin (France) are old friends who have attended PHA Conferences and who we've worked with on many projects.

I was honored to be invited to give a presentation about PHA in the U.S.  As I spoke and heard the questions during and after, it was clear that, while we may speak different languiages and live in different places our cause is the same...and that the cooperative spirit and common purpose that has made progress possible and rapid in the U.S. is the backbone of growth in Europe, as well.

We look forward to our continuing and  growing partnership.