30 Milestones in 30 Years

4 women connect to help pulmonary hypertension patients

At the time the Pulmonary Hypertension Association (PHA) was organized, only 50 cases of pulmonary hypertension (PH) were known. There was no hope, little knowledge and little research. ;xNLx;;xNLx;In 1987, three women with PH set out to change that bleak picture: Dorothy Olson, Teresa Knazik and Shirley Brown. Given their own experiences, they knew there were many more living – and dying – amid the confusion of misdiagnosis. ;xNLx;;xNLx;Dorothy, Teresa and Shirley found each other through the National Organization for Rare Disorders. A fourth patient, Pat Paton, soon joined the small planning group. Because they found each other, they believed they could find others with the disease who felt alone and isolated. ;xNLx;;xNLx;Over the next four years, they worked to build a community of people affected by PH. Ultimately, their work to connect, educate, support and advocate patients became the Pulmonary Hypertension Association. To this day, PHA’s mission is to extend and improve the lives of those affected by PH.;xNLx;;xNLx;Follow this 30th Anniversary timeline to discover 30 PH milestones and PHA achievements.;xNLx; ;xNLx;;xNLx;Sources: PHA archives, [The PHA Story by Dorothy Olson, Pat Paton, Judy Simpson and Bonnie Dukart](https://phassociation.org/wp-content/uploads/2017/02/The-PHA-Story-A-Short-History.pdf), and [A Detailed History of PHA by Gail Boyer Hayes](https://phassociation.org/wp-content/uploads/2017/02/The-PHA-Story-A-Detailed-History-1987-99.pdf)

1991-03-01 00:00:00

Kitchen table organizational meeting

In January 1991, the founders and their husbands met for what has become known as the “kitchen table” organization meeting.

1991-03-05 00:00:00

First PH support group meeting

In 1991, Shawn Wiggins organized the first PH support group meeting at her home in Evanston, Illinois.

1992-03-01 00:00:00

UPAPH officially becomes nonprofit

When UPAPH was incorporated in Florida, an attorney mistakenly registered it as a for-profit business, not as 501(c) (3) tax-exempt charity.

1992-03-05 00:00:00

Scientific Advisory Board created

In 1992, Judy Simpson compiled a list of physicians who treated PH and distributed it to patients.

1994-03-01 00:00:00

First PH Conference

UPAPH’s first International Conference was in June 1994 at Stone Mountain resort near Atlanta.

1995-05-01 00:00:00

FDA approves first PH drug

In October 1991, the same year that Pat, Judy, Dorothy and Teresa were setting up their new organization, Burroughs Wellcome (now GlaxoSmithKline) was working on a drug called prostacyclin (Flolan).

1995-05-01 23:59:59

Patient support line created

As PHA grew, the organization adhered to its mission to support patients. It established a toll-free patient-to-patient helpline (800-748-7274).

1996-03-01 01:00:00

First Research Room leads to PH gene discovery

PHA’s first Conference in 1994 established a popular feature with patients and researchers: Research Room. It also led to the 1996 discovery of a gene for familial pulmonary arterial hypertension.

1997-02-01 06:49:00

Launching a new identity

UPAPH was in the process of becoming the Pulmonary Hypertension Association as internet use was increasingly widespread.

1997-07-01 08:36:36

First PH/PPH Awareness Week

PHA orchestrated the first national PH/PPH Awareness Week in November 1997.

30 Milestones in 30 Years

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