In January of 1991, PHA’s four founders came together to end
isolation – their own and that of all others whose lives have been touched by
PH. Their message to others living with
PH was, “You are not alone!”
Today, twenty four years later, that message continues. It has become a rallying cry not only for
patients and families but medical professionals and researchers, as well. It speaks to the reality that we are stronger
when we stand together.
This week, I found myself thinking about the globalization
of that unity.
The story goes back to 2000…
In Chicago in June of
that year, people from seven nations came together at PHA’s Fourth
International Pulmonary Hypertension Conference. At the time, there were three PH associations
in the world, the U.S.http://www.phassociation.org (1991), France (1996) and Germany (1996). At the end of the Conference, our board
invited all those from other nations to meet with them. About a dozen people came. We stayed in touch
over the internet and before the end of the year, PHA of the United Kingdom and
PHA Israel had both formed. Now there
were five!
As we prepared for PHA’s 2002 Conference in Irvine,
California, we planned ahead for an International
We asked a simple question, “How can we help?” After a good amount of discussion, a patient
from Mexico said, “You are the oldest and the biggest association. We need to learn from you and from each
other. We need you to help.”
At the end of the meeting, PHA agreed to try to raise funds
for an International Coordinator. In
2004, I introduced that person, Allison Marian to our international guests at
the 2004 Conference in Miami. That was
ten years ago. Allison was followed by
Angie Knott (today back in her home country as National Manager of PHA Canada),
others and today, Julia Friederich.
These PHA staffers have maintained daily contact with our peers around
the globe. They have used connections to
our staff of over 40 to solve problems and create value and opportunity for our
partners.
When we began this international work, a board member asked
an important question, “Why?” The answer
was clear and immediately accepted by our leadership. We are all in this together
and, as we end isolation – wherever in the world it may be – we all become
stronger in the fight against PH.
Put more simply, it’s the right and the smart thing to do.
By sharing our resources and building communications
networks, we all grow more rapidly. We
minimize mistakes and encourage those who are isolated to take the first steps
toward unifying and organizing. We make
sure that any good idea – no matter where in the world it emerges – is available
to and used for the good of all. We
accelerate the fight against PH. We
maximize its effectiveness.
Today, there are 68 national PH associations across the
globe. Umbrella structures are in place in Europe (PHA Europe) and Latin
America (Sociedad Latina de Hipertensión Pulmonar).
Associations are active in Asia, the Middle and Far East, Africa and
North America. We continue to grow
together.
At PHA’s 2010 Conference and Scientific Sessions, we
introduced the International Leadership Summit as an opportunity for
association leaders around the world to get to know each other personally. The friendships and direct exchanges that
emerged proved the value of the session.
The second Summit brought together leaders from 23 nations (30 nations
were represented at conference overall).
We just got word this week that our funding is in place for the Third
International Leadership Summit. It will
take place as part of the 2014 PHA International Conference in Indianapolis.
It is one of the important activities – patient, family and
medical education, scientific sessions, networking opportunities and research being
among the others – that make the International PH Conference the largest and
most essential PH meeting in the world.
It's also a place where none of us are alone and all of us are stronger. No matter where in the world we live, we are one...brushing aside the shadows, sharing the flame.
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