Pulmonary Hypertension Association

The Pulmonary Hypertension Association (PHA) is a 501(c)(3) non-profit support, education, advocacy and awareness association for pulmonary hypertension (PH). It provides information to the public about the illness and acts as a support group for those with the disease, providing medical provider location services and emotional support for those suffering from the illness.

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History

The PHA was formed in 1987 or 1988 by three pulmonary hypertension patients. By 1990, it had 100 members and started its newsletter, the Pathlight. In 1992 it established the Doctor's List (a list of doctors treating PH). By 2004, it had grown to over 3,400 members and had an annual budget of over $5 million. Presently it has more than 8,000 members.

Activities

Help line

The Association maintains a help line at +1-800-748-7274 staffed by persons living with PH to support and provide information to those with PH.

Support groups

PHA supports a network of more than 145 local support groups. They meet personally and via E-mail and LISTSERV. The Association maintains a "Find A Doctor" list.

Conferences

Bi-Annually, PHA hosts an international conference dedicated to scientific and medical teaching on the topic of PH. The 2006 International PH Conference was attnded by more than 300 medical professionals and researchers and featured more than 60 research abstracts.^[1]

Awareness publications

PHA funds and distributes a host of literature regarding PH, including the Patient's Guide to Pulmonary Hypertension, Pathlight, and Persistent Voices. Advances in Pulmonary Hypertension is distributed quarterly to more than 35,000 medical professionals.^[1]

Research

PHA raises research funds through golf tournaments, charity auctions, and other events. PHA funds a number of research projects with the proceeds. PHA jointly funds research with the National Heart, Lung, and Blood Institute, the American Thoracic Society, and completely funds two grants per year in PH research.^[1]

Advocacy

The Association has been instrumental in the Pulmonary Hypertension Research Act (H.R. 3005, S. 1774, now co-sponsored by 247 members of the House and 13 members of the Senate^[1]), dealing with governmental officials over airline oxygen portability, and the placement of PH on the National Institutes of Health priority list.

Notes and References

• Pulmonary Hypertension Association

International affiliations

PHA has a memorandum of understanding with these organizations:

• British Columbia Pulmonary Hypertension Society
• The Manitoba Pulmonary Hypertension Support Group
• New Brunswick Pulmonary Hypertension Society
• PHA China
• PH Europe
• PH Israel
• Associazione Ipertensione Polmonare Italiana
• Associazione Malati Ipertensione Polmonare
• Pulmonary Hypertension Association of Japan
• Asociacion Mexicana de Hipertension Arterial Pulmonar
• PHA-Nederland
• PHA-UK

References