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 Ronald J. Oudiz, MD
Associate Professor of Medicine
UCLA School of Medicine
Director, Liu Center for Pulmonary Hypertension
Division of Cardiology
Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center
Torrance, California
Immediate Past Editor Vallerie V. McLaughlin, MD
Associate Professor of Medicine
Director, Pulmonary Hypertension Program
University of Michigan Health System
Ann Arbor, Michigan
Editor-in-Chief Elect Richard Channick, MD
Professor of Clinical Medicine
Pulmonary and Critical Care Division
University of California, San Diego Medical Center
San Diego, California
Associate Editors Erika Berman Rosenzweig, MD
Assistant Professor of Pediatrics
Department of Pediatrics
Columbia College of Physicians and Surgeons
New York, New York
Robert Frantz, MD
Consultant in Cardiovascular
Diseases and Internal Medicine
Assistant Professor of Medicine
Mayo Clinic College of Medicine
Rochester, Minnesota
Srinivas Murali, MD, FACC
Professor of Medicine
Drexel University College of Medicine
Director, Division of Cardiovascular Medicine
Medical Director, Gerald McGinnis Cardiovascular Institute
Allegheny General Hospital
Pittsburgh, Pennsylvania
Publisher
Pulmonary Hypertension Association
Jack Stibbs, Board Chair
Rino Aldrighetti, President
Rachel Pokorney, Medical Services Associate Director
Publishing Staff
Stu Chapman, Executive Editor
Susan Chapman, Managing Editor
Heidi Green, Associate Editor
Gloria Catalano, Production Director
Michael McClain, Design Director
Editorial Offices
Advances in Pulmonary Hypertension
DataMedica
424 Dune Road Westhampton Beach, NY 11978
Tel: 631-288-7733
Fax: 631- 288-7744
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 ly 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
Todd Bull, MD
Division of Pulmonary Sciences and Critical Care Medicine
University of Colorado Health Sciences Center
Denver, Colorado
Murali Chakinala, MD
Director, Pulmonary Hypertension Clinic
Washington University School of Medicine
St. Louis, Missouri
Kristin Highland, MD
Assistant Professor
Division of Pulmonary and Critical Care
Director, Pulmonary Hypertension Clinic
Medical University of South Carolina
Charleston, South Carolina
Jim Maloney, MD
Associate Professor of Pulmonary and Critical Care Medicine
University of Colorado Health Sciences Center
Denver, Colorado
Ioana Preston, MD
Assistant Professor of Medicine
Tufts - New England Medical Center
Boston, Massachusetts
Zeenat Safdar, MD
Assistant Professor of Medicine
Department of Medicine, Pulmonary & Critical Care Section
Pulmonary Hypertension Center
Baylor College of Medicine
Houston, Texas
Rajan Saggar, MD
Assistant Professor
Division of Pulmonary and Critical Care
Medicine and Hospitalists
David Geffen School of Medicine
UCLA
Los Angeles, California
Robert Schilz, DO, PhD
Medical Director of Lung
Transplantation and Pulmonary Vascular Disease
University Hospital of Cleveland
Case Western Reserve University
Cleveland, Ohio
Francisco Soto, MD, MS
Assistant Professor
Director, Pulmonary Hypertension Program
Medical College of Wisconsin
Milwaukee, Wisconsin
Roxana Sulica, MD
Assistant Professor of Medicine
Albert Einstein College of Medicine
Director, Beth Israel Pulmonary Hypertension Program
Beth Israel Medical Center
New York, New York
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
