The Pulmonary Hypertension Association (PHA) is a 501(c)(3) non-profit support, education, advocacy and awareness association for pulmonary hypertension

Pulmonary hypertension

In medicine, pulmonary hypertension is an increase in blood pressure in the pulmonary artery, pulmonary vein, or pulmonary capillaries, together known as the lung vasculature, leading to shortness of breath, dizziness, fainting, and other symptoms, all of which are exacerbated by exertion...

 (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.

History

Three female pulmonary hypertension patients came together in 1987 with the hope of reaching other PH patients. The goal was to connect PH patients with one another, help locate PH specialists and centers, form support groups, and publish a newsletter about the PH community. In 1990 the women started mailing newsletters, Pathlight, to about 100 people and a fourth woman soon connected with the three PH patients and the United Patients Association for Pulmonary Hypertension (UPAPH) was formed. UPAPH officially changed its name to the Pulmonary Hypertension Association (PHA) in 1997 and hired its first full time staff member in 1999. The organization has grown to over 10,000 members who include patients, family members, and medical professionals. PHA was founded through the spirit of volunteers and continues to exist, in part, due to an active patient community.

Envelope of Hope

The Envelope of Hope is a free resource for newly diagnosed PH patients. It gives patients an overview of the disease and the next steps in finding a PH specialist.

Support Line

PHA facilitates a patient-to-patient support line. Pulmonary hypertension patients can call the support line and connect with a long-term PH patient: +1-800-748-7274. PH patients can use the support line to:
1. Talk to another PH patient immediately.
2. Ask questions and receive guidance on how to live with PH.
3. Find a local doctor.
4. Find a local support group.

Support groups

• Support Group Meetings:PHA supports a network of more than 230 local support groups in 49 states. They meet personally and via E-mail
  E-mail
  Electronic mail, commonly known as email or e-mail, is a method of exchanging digital messages from an author to one or more recipients. Modern email operates across the Internet or other computer networks. Some early email systems required that the author and the recipient both be online at the...
  
   and LISTSERV
  LISTSERV
  LISTSERV was the first electronic mailing list software application, consisting of a set of email addresses for a group in which the sender can send one email and it will reach a variety of people...
  
  . Support groups offer opportunities for knowledge, support, hope, and empowerment.

• Virtual support groups: Support group chat rooms and message boards allow geographically isolated patients to connect with one another.

• Mentor Program: PHA created a mentor program in which PH patients and their caregivers can connect, via email, to other long term PH patients and long term caregivers.

• Generation Hope: The Generation Hope e-mail group is a group solely dedicated to young adults living with PH. The age range is anywhere from college students to adults in their early thirties.

Survival Guide

Pulmonary Hypertension: A Patient’s Survival Guide was written by a PH patient and published by the Pulmonary Hypertension Association. It contains information about current PH treatments, patient care, and explains how pulmonary hypertension affects the body. Currently, it is reviewed by a medical editor and chapters are updated by both patients and PH specialists.

Conferences

• International PH Conference: PHA hosts an International PH Conference every two years on even-numbered years. Patients, PH caregivers, and PH specialists meet to network, attend educational sessions, and discuss treatment options and research. The biennial conferences typically last two and a half days.

• PHA on the Road: These are one day regional educational events for PH patients and caregivers. Patients meet local doctors and receive up to date information on research, treatment, and living with PH. Patients are also given the opportunity to network with other local patients.

Advocacy, Awareness, Fundraising

• Media: PHA coordinates a media awareness campaign called PHAware. The campaign connects PH patients interested in reaching out to local and national media outlets to tell their personal PH story, raise awareness and educate their communities about PH.

• Legislation: PHA sponsors a grassroots advocacy campaign called the 435 Campaign. The campaign connects PHA constituents interested in contacting and building relationships with Members of Congress in order to advocate for legislation pertinent to the PH community. The cornerstone of the 435 Campaign is the Tom Lantos Pulmonary Hypertension Research and Education Act.

• Tom Lantos Bill: The Tom Lantos Pulmonary Hypertension Research and Education Act would increase funding for research and public awareness efforts for pulmonary hypertension. It was originally introduced to the House of Representatives in 2000 by Rep. Kevin Brady
  Kevin Brady
  Kevin Patrick Brady is the U.S. Representative for , serving since 1997. He is a member of the Republican Party. The district includes a large swath of suburban and rural territory around Houston and Beaumont....
  
   (R-TX) and is named for the late Rep. Tom Lantos
  Tom Lantos
  Thomas Peter "Tom" Lantos was a Democratic member of the United States House of Representatives from 1981 until his death, representing the northern two-thirds of San Mateo County and a portion of southwest San Francisco...
  
  , whose granddaughter, Charity Sunshine Tillemann-DIck
  Charity Sunshine Tillemann-Dick
  Charity Sunshine Tillemann Dick is an American-born soprano. She has performed across the United States, Europe, and Asia. Some venues include The Kennedy Center in Washington, DC; Severance Hall in Cleveland, Ohio; Il Giardino Di Boboli in Florence, Italy; The National Symphony Hall in Budapest,...
  
  , had PH.

• Insurance: PHA coordinates an Insurance Advocacy and Education Program. The goal is to improve “timely access to affordable treatment” for pulmonary hypertension patients through an online insurance guide, patient referrals and advocacy efforts.

• Special Events: PHA helps volunteers plan special events fundraisers which can include walks, dinner parties, galas, and golf tournaments. One of the most notable recent events, Path to a Cure, involved two cardiologists and a physician’s assistant climbing Mt. Kilimanjaro to raise money for PHA. PH patient groups throughout the U.S. organized solidarity walks to support their efforts. They raised more than $100,000 for the organization that was designated to both patient-serving programs and research.

Medical Education Programs

• 30-City Program: Indicated by its name, these dinner programs take place in 30 different cities each year and aim to reach areas that aren’t easily accessible to recognized PAH centers to provide education about PH. These programs are open to specialists, general physicians, nurses, and residents. The goal of the program is to help doctors accurately diagnose PH early, prescribe long-term care for patients, and connect with a PH specialist who can help with treatment options of the rare disease.

• Preceptorship Program: These day-long educational programs take place at nationally recognized PAH centers. Medical professionals learn about PAH diagnosis and treatment management options. Networking is an important part of this event, as attendees are encouraged to establish professional relationships with the PH specialists at these programs.

• On-Demand Program: PHA provides continuing medical education on an on-demand basis as requested by medical professionals. The host chooses from a variety of program format options and topics that focus on PH. Each programs is led by a pulmonary hypertension specialist.

• Building Medical Education in PH: These programs bring PH specialists together at recognized PH centers across the country. PH doctors are able to gain the most up-to-date research and network with other specialists.

• Online University: The Online University is a virtual educational resource for health professionals. The Online University provides continuing medical education about PH for doctors and allied health professionals, including information about the most recent research and treatment in the field.

Research

PHA has partnerships with the National Heart, Lung, and Blood Institute (NHLBI), the American Thoracic Society (ATS), and the American Heart Association (AHA). Over 40 grants, totaling $9 million, have been awarded to researchers in the field of PH.

Publications

• Pathlight: Pathlight is the organization’s quarterly newsletter and it provides news and information for the PH community. Medical professionals, PH patients, and PH caregivers all contribute to Pathlight. Twice a year, Pathlight includes Persistent Voices, which features the personal stories, poetry and artwork of patients and caregivers who have been affected by PH.

• Advances in Pulmonary Hypertension: PHA is the publisher of this medical journal , in which PH specialists write articles on PH diagnosis and treatment for other medical professionals. The journal has three objectives: serve as a forum for the most recent research in the field of PH, promote discussion of pulmonary hypertension related issues, and involve PH specialists who have made great contributions towards pulmonary hypertension research, treatment, etc. All content in the journal is reviewed by a medical editor.

Medical Community

• PH Clinicians and Researchers (PHCR): This is a professional membership organization of PH treating physicians and PhD-level researchers. PHCR members use this community to connect with others about PH-related issues and resources, and primarily communicate through a listserv set up by members.

• PH Professional Network (formerly the PH Resource Network): This is a professional membership organization of allied health professionals that typically include nurses, pharmacists, physician’s assistants, and respiratory therapists. PHPN meets both in person and communicates through e-mail to share resources and discuss PH-related issues. PHPN holds a biennial Symposium on odd-numbered years.

Leadership

• Board of Trustees: The Board of Trustees is made up of PH patients, PH caregivers, and PH specialists. The Board meets twice a year in person to oversee the organization.

• Scientific Leadership Council: The Scientific Leadership Council (SLC) is made up of 28 doctors who work in the field of pulmonary hypertension. The SLC provides strategic direction for PHA’s medical programs.

1. Consensus statements: The SLC produces consensus statements on issues related to PH such as stem cell clinical trials, travel recommendations for PH patients, and Lung transplantation in PH patients.
2. Fact sheets: The SLC produces fact sheets about each of the approved treatments for PH.

• Pulmonary Hypertension Association

International affiliations

PHA has a memorandum of understanding with these organizations:

Asociación Nacional de Hipertensión Pulmonar

PHA Australia

PHA Austria

Associação Brasileira de Amigos e Familiares de Portadores de Hipertensão Arterial Pulmonar (Brazil)

Associazione Ipertensione Polmonare Italiana (Italy)

Associazione Malati Ipertensione Polmonare (Italy)

Asociación Mexicana de Hipertensión Arterial Pulmonar (Mexico)

British Columbia PH Society (Canada)

PHA Canada

PHA China

PHA Europe

Pulmonare Hypertonie e.V (Germany)

Fundación Colombiana de Hipertensión Pulmonar (Colombia)

Fundación Venezolana de Hipertensión Pulmonar (Venezuela)

PH Israel

PHA Japan

PHA Korea (S. Korea)

Manitoba PH Support Group (Canada)

PHA-Nederland

PH New South Wales (Australia)

PHA Norway

Sdrunzeni Pacientus Plicni Hypertenzi

PHA Turkey

PHA-UK