PHA
Web Site— www.phassociation.org— Best Kept Secret
on the Internet
Whether you like to casually surf the Web and explore various medically
oriented sites or directly seek specific information on a topic of interest,
the Web site of the Pulmonary Hypertension Association (PHA) is an
often overlooked treasure trove of valuable content. I say overlooked
because we often view Web sites as part of a serendipitous search, as
merely a means toward an end of retrieving the information we seek;
but PHA’s site is a destination as well, a virtual labyrinth waiting to be
discovered. And more people are discovering it—115,000 visitors per
month to its 3000 pages, and 500 messages posted per week on its main message
board. Physicians are always telling me how helpful it has been in directing them—or
their patients and staff—to nuggets of information they could not have found otherwise.
Where else, for example, could you find information on such diverse topics in pulmonary
hypertension as active clinical trials, the latest meeting on how patient advocates
will discuss key concerns with their congressional leaders, an interactive map to search
for a prominent physician in any state specializing in pulmonary hypertension care, or
special events like a Christmas tree fundraiser that benefits the pulmonary hypertension
community?
Navigating the site is easy. The topics are conveniently arranged to appeal to the
visitor’s particular query or need. The links for healthcare professionals are clearly delineated
and easily accessed. As the pulmonary hypertension community has grown, so has
the need for an efficient roadmap with specific points of interest and signposts along the
way to guide one toward a connection or network one seeks. This is extremely important
at a time when improved communication at all levels—among patients, physicians,
families, and allied healthcare personnel—can help in promoting clinical trial enrollment,
an exchange of ideas on new treatment approaches, and an overall sense of where we
stand in making such progress. In facilitating this communication PHA’s site serves as a
forum and a vehicle to keep the pulmonary hypertension community working together.
Proof of the site’s value comes from numerous tributes to its role in the lives of the
pulmonary hypertension community. Consider this comment from a patient, Marilyn
Haney, posted in the “Our Journeys” section of the site: “I was diagnosed in mid 2004
with primary pulmonary hypertension. ‘I have what?’ Honestly, I had never heard of this
disease. I dove right in to educate myself, beginning with my pulmonologist who referred
me to PHA. The Web site, as well as A Patient’s Survival Guide, gave me a clear understanding
of what PH is, what treatments are available, and what is currently happening
to find a cure.”
As helpful as the PHA site is, PHA acknowledges its limitations and advises everyone
by posting this message: “The information provided on the PHA website is provided for
general information only. It is not intended as legal, medical or other professional advice,
and should not be relied upon as a substitute for consultations with qualified professionals
who are familiar with your individual needs.” Yet the information provided on
the site is perhaps the next best thing to a consultation in that it points patients and
caregivers alike to the appropriate source or resource. By fulfilling that role, the site
has become an integral part of the pulmonary hypertension community and we are
grateful for its continuing evolution and the benefit it provides to us all.
Editor-in-Chief Richard Channick, MD
Professor of Clinical Medicine
Pulmonary and Critical Care Division
University of California, San Diego Medical Center
San Diego, California
Immediate Past Editor Ronald J. Oudiz, MD
Associate Professor of Medicine
The David Geffen School of Medicine at UCLA
Director, Liu Center for Pulmonary Hypertension
LA Biomedical Research Institute at Harbor-UCLA Medical Center
Editor-in-Chief Elect Erika Berman Rosenzweig, MD
Director, Pulmonary
Hypertension Center, Columbia University Medical Center Associate
Professor of Clinical Pediatrics (in Medicine)
Associate Editors
Kristin Highland, MD
Assistant Professor of Medicine
Division of Pulmonary, Critical Care, Allergy and Sleep Medicine
Medical University Of Carolina
Francisco Soto, MD, MS
Director, Pulmonary Hypertension Program
Pulmonary and Critical Care Medicine
Medical College of Wisconsin
Todd Bull, MD
Associate Professor of Medicine
Division of Pulmonary Sciences and Critical Care Medicine
University of Colorado Health Sciences Center
Robert Schilz, DO, PhD
Medical Director of Lung
Transplantation and Pulmonary Vascular Disease
University Hospital of Cleveland
Case Western Reserve University
Cleveland, Ohio
Publisher
Pulmonary Hypertension Association
Carl Hicks, Board Chair
Rino Aldrighetti, President
Sherrie Borden, Vice President, Medical and Patient Education
Publishing Staff Managing Editor
Deborah L. McBride
McBride Strategic Services
mcbridedeb@aol.com
P: 773-348-5455
C: 312-307-5455
Design Director
Michael McClain
Advances in Pulmonary Hypertension is circulated to
cardiologists, pulmonologists, rheumatologists and other selected
physicians by the Pulmonary Hypertension Association. The contents of the articles are independently determined by the Editor
and the Editorial Advisory Board.
Editorial Mission Advances in Pulmonary Hypertension is committed
to help physicians in their clinical decision
making by informing them of important
trends affecting their practice. Analyzing the
impact of new findings and covering current
information in the peer-reviewed literature,
Advances in Pulmonary Hypertension is published
four times a year. Advances in Pulmonary
Hypertension is the official journal
of the Pulmonary Hypertension Association.
Each article in this journal has been reviewed
and approved by members of the Editorial
Advisory Board.
Editorial Board
Charles Burger, MD
Medical Director, PH Clinic
Mayo Clinic
Jacksonville, FL
Karen Fagan, M.D. Chief, Division of Pulmonary and Critical Care Medicine University of South Alabama
Eli Gabbay, MD
Lung Transplant Unit
Royal Perth Hospital
Nick Kim, M.D.
Associate Clinical Professor of Medicine
University of California San Diego
Deborah Jo Levine, M.D.
University of Texas Health Science Center at San Antonio
San Antonio, TX
Omar Minai, MD
Dept of Pulmonary, Allergy and Critical Care Medicine
Myung Park, MD
Associate Professor of Medicine
Division of Pulmonary Sciences and Critical Care Medicine
University of Colorado Health Sciences Center
Fernando Torres, MD Director Pulmonary Hypertension Clinic
UTSW Medical Center Dallas
University Hospital
Glenna Traiger, RN, MSN
Pulmonary & Critical Care
Pulmonary Hypertension CNS
University of California Los Angeles
Los Angeles, CA
R. James White, MD, PhD
Assistant Professor of Medicine, Pharmacology & Physiology
University of Rochester, Division of Pulmonary and CCM
Roham Zamanian, MD
Division of Pulmonary and Critical Care Medicine
Stanford University Medical Center
The
information provided on the PHA website is provided for general information
only. It is not intended as legal, medical or other professional
advice, and should not be relied upon as a substitute for consultations
with qualified professionals who are familiar with your individual
needs.
PHA
Web Site— www.phassociation.org— Best Kept Secret
on the Internet
