Patient Telephone helpline:
1-800-748-7274
The helpline is one of PHA's most valuable resources. Currently,
it is operating with 15 volunteers who answer an average of 12
calls a day. Fourteen of the fifteen are patients. All have lived
with the illness at least three years. Six of the volunteers are
also nurses. The fact that our helpline is answered by patients
who are receiving the calls at their homes makes it possible for
PHA to offer a unique and valued service to people struggling
with pulmonary hypertension.
PHA Support Groups: An
Expanding Network
In 1990, PHA was founded out of a single support group. In 2001,
PHA had 44 support groups. By the third quarter of 2003, the network
had grown to over 110. Besides fellowship and help in dealing
with the "aloneness" of PH, support groups are providing
education on living with PH and many groups are becoming involved
in advocacy.
PHA recognizes that servicing a network of 100
support groups is very different from supporting a network of
ten or fifteen. Our goal for 2004 is to provide more targeted
service to our support groups. To this end, PHA has staffed a
new Volunteer Services position that includes responsibility for
establishing regular communication with support groups and providing
them with the necessary educational tools as they strive to improve
their levels of organization and service to patients.
In mid-2003, PHA sent all support group leaders
a 90-minute training video with ideas to help them organize and
strengthen their groups. The tape came out of a daylong peer-to-peer
training session PHA had organized at Conference 2002.
Publications
PHA's two newsletters continue to be well-received. The quarterly
Pathlight grew to 24 pages by September of 2003. Editor
Shirley Craig, a PH patient herself, involved more volunteers
in the process than ever before. Jerry Wojciechowski, also a PH
patient, continues to edit the reformatted Persistent Voices.
The third edition of the Patient's Survival
Guide is being written by Gail Boyer Hayes, with support
from a team of patient and medical volunteers, and is expected
to be published by the end of 2004. Meanwhile, the 200+ page second
edition is hugely popular both with patients and medical professionals.
Daily requests come in for PHA's two brochures,
Pulmonary Hypertension: Helpful Information for Patients and
Families and PHA Lighting the Path: A Community of Hope.
PHA's educational materials are more heavily distributed than
ever before, and PHA is looking to translate them into other languages
to reach even more people.
Online community - www.phassociation.org
An enhanced version of PHA's website proved its value to the PH
community in 2003. Added features such as daily news updates supplied
visitors with the latest PH-related information, and a growing
online community provided ample opportunities for people to connect
with each other. These enhancements are attracting more people
to the site each month. In August 2003, the website had between
2,000-4,000 visitors per day, with a monthly total of over 70,500.
With well over 300 messages being posted per week, the message
boards are the most heavily trafficked part of the website. Visitors
are also spending an increasing amount of time reading PHA's educational
pages, including the Frequently Asked Questions, Medical Resources,and
‘Learn about PH’ sections.
Less than three years after its inception in May
of 2000, PHA celebrated the 1,000th subscriber to its bi-weekly
electronic newsletter PHA News, edited by PH patient
Sally Maddox. Through increased visibility on the website, the
subscription roster grew to over 1,800 between March and October
of 2003.
In early 2003, internet support groups began to
take shape. Participants in PHA's message boards began to take
advantage of PHA's new online "chat" facilities and
invited other patients to a weekly live-time electronic discussion.
Now, regular chats are being held on PHA's website five days out
of the week. PHA is working to establish more volunteer facilitators
in order to have one chat each day of the week, and to generate
more audience-specific chats. Chats for youth with PH, parents
of children with PH, and moderated medical forums to be developed
in conjunction with the PH Resource Network are on the agenda
for 2004. This will allow us to provide access to, and direct
conversation with, medical and patient leaders.
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