In
1987 three pulmonary hypertension patients set out to change a very bleak
picture for those with PH. At the time there was no hope, little knowledge
and little research. The three patients, Dorothy Olson, Teresa Knazik
and Shirley Brown found each other through NORD, National Organization
for Rare Disorders and were soon joined by Pat Paton. These four set out
to:
- Aid patients
and their families in coping with this devastating disease
- Provide
networking opportunities to end the "aloneness" of a rare
illness
- Assist
in locating doctors and medical facilities with expertise in treating
pulmonary hypertension
- Form
support groups to allow patients to network and open contact with others
- Begin
to publish a newsletter that would build a sense of community
By 1990 there were 100 members and a newsletter, “Pathlight”. Early initiatives included the creation of a Scientific Advisory Board (SAB) to help end the isolation of physicians treating patients with PH, a toll-free patient-to-patient PH helpline, and the Doctor’s List, a list of physicians treating PH. In 1994 PHA held its first International Conference, attracting 200 attendees from around the country, including 68 patients. Since 1994, PHA has grown to an organization of more than 9,500 patients, family members, and medical professionals as members and an additional 33,000 supporters and friends. Today, the organization offers:
- A network of over 140 patient support groups.
- An active and growing patient-to-patient telephone helpline.
- A biennial conference and scientific sessions, which in June 2006 attracted over 1,100 patients, medical professionals, and members of the PH community.
- Three research programs that, through partnerships with the National Heart Lung and Blood Institute and the American Thoracic Society, will have directed more than $6 million toward PH research as of December 2007.
- Numerous electronic and print publications, including the first medical journal devoted to pulmonary hypertension – published quarterly and distributed to all cardiologists, pulmonologists and rheumatologists in the U.S.
- A website dedicated to providing educational and support resources to patients, medical professionals and the public that, over the past nine years, has grown from receiving 600 visitors a month to receiving 390,000 visitors a month.
