Disease, Disorders, Medical Disciplines

Pulmonary Hypertension Association Inc

  • Silver Spring, MD
  • http://www.PHAssociation.org

Mission Statement

The mission of the Pulmonary Hypertension Association (PHA) is to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, advocacy and awareness.

Main Programs

  1. Patient and Medical Professional Services
  2. Research

service areas

International

Self-reported by organization

ruling year

1999

chief executive

Mr. Rino Aldrighetti

Self-reported by organization

Keywords

pulmonary, lung, heart, rare disease, pulmonary hypertension, PH

Self-reported by organization

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EIN

65-0880021

Physical Address

801 Roeder Road Suite 1000

Silver Spring, MD 20910

Contact

Cause Area (NTEE Code)

Lung (G45)

Alliance/Advocacy Organizations (G01)

Specifically Named Diseases (G80)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Programs + Results

How does this organization make a difference?

Impact statement

Every year PHA strives to offer resources to better meet the unique challenges faced by patients, caregivers, and medical professionals in the PH community. PHA’s accomplishments in 2012 include, but are not limited to: hosting the largest International PH Conference with more than 1,500 registrants,  more than 230 support groups around the country; dozens of opportunities for online and phone connections between adult, young adult, teen patients, caregivers and bereaved family members; in-depth and targeted education for medical professionals at all levels; resources to enable individuals to raise awareness and support for PH through print, media, social networking and with policy-makers.PHA’s goals for 2013 include, but are not limited to: awarding the first ever research grant for the Robyn Barst Pediatric PH Research Fund; increasing knowledge and understanding of pulmonary hypertension through a vital early diagnosis campaign, Sometimes it’s PH as well as grassroots advocacy and awareness programs, and continuing to provide high-quality support and education for patients, family members and medical professionals.

Programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

Self-reported by organization

Program 1

Patient and Medical Professional Services

PHA provides hope to the PH community by improving patient lives and working towards a cure. PHA provides patients and families with support, education and advocacy. PHA works to raise awareness of pulmonary hypertension among people living with PH, but who are currently undiagnosed. Many PHA programs are supported by our grassroots supporters: patients, caregivers, medical professionals and friends.

Category

None

Budget

$3,603,064.00

Population Served

General Public/Unspecified

None

None

Program 2

Research

PHA champions new research in the field, currently funding over a dozen currently active research grants in two peer-reviewed grant programs. PHA also has a partnership with NIH/NHLBI that leverages additional funds for medical research.

Category

None

Budget

$548,500.00

Population Served

General Public/Unspecified

None

None

service areas

International

Self-reported by organization

Blog

The organization's Blog

Social Media

@PulmonaryHypertensionAssociation

@short_of_breath

@pulmonary-hypertension-association

@PHAssociation

@phassociation

@phassociation

Funding Needs

PHA seeks funding for organizational programs and services, as well as for sponsoring PH-related research. To make a donation to PHA, visit the www.PHAssociation.org/Donate or call the main office number: 301-565-3004.

Accreditations

Charity Navigator

Better Business Bureau Wise Giving Alliance

External Reviews

The review section is powered by Great Nonprofits
Source: greatnonprofits.org

Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

PULMONARY HYPERTENSION ASSOCIATION
Fiscal year: Jan 01-Dec 31
Yes, financials were audited by an independent accountant.

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Operations

The people, governance practices, and partners that make the organization tick.

Pulmonary Hypertension Association Inc

Leadership

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Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2013, 2012 and 2011
  • Board Chair and Board Members
  • Access to the GuideStar Knowledge Base Search
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CHIEF EXECUTIVE FOR FISCAL YEAR

Mr. Rino Aldrighetti

BIO

Rino Aldrighetti was hired as PHA's first professional staff member on January 1, 1999.
He worked for PHA on a part-time basis for two years while continuing to operate his consulting business, and in 2001 Rino transitioned to a full-time employee. As PHA's President and CEO, Rino has moved PHA from 1,000 members to over 10,000 members and 28,000 friends and supporters. Under his leadership, PHA's annual budget has increased from $137,000 to over $12,000,000. Rino's background is in fundraising, association management and community organizing.
He has led a number of organizations, including National Voluntary Organizations Active in Disaster and Neighborhoods Together. He also established new development departments for the National Alliance for the Mentally Ill and the National Council for Adoption.
Through his consulting work in the 1990s, Rino provided services to non-profit organizations in the United States and Canada.
He has also been an elected official, serving as a city council member and on various state and regional Council of Government committees.

STATEMENT FROM THE CEO

"Pulmonary hypertension may be an accident of fate but change is an act of will.Lately, we’ve been struck by some numbers. There are about 7,000 identified diseases with 200,000 or fewer patients—the government definition of a rare disease. Only 200 of those diseases have one or more treatments—just under 400 treatments in total.Pulmonary hypertension, a disease with 30,000 diagnosed patients in the U.S., has nine approved treatments, with more in development.This small disease has two active medical associations. It has five strong research programs, 235 support groups in 49 states, a highly regarded medical journal reaching 68 nations, daily patient and medical professional dialogue through vibrant online discussion groups and electronic and face-to-face patient and medical education of the highest quality and quantity. All of this is happening through PHA.The reason for so much productive motion in a small disease state may not be simple but it is basic. To paraphrase Gandhi, we are the change we want to see in the world. PHA’s role is to facilitate possibilities. Your choice is to accept and use them. Every year more and more of us do and, together, we are accelerating possibilities. Together, we are seeing advances at a speed unusual, if not unique, in medicine. We may not be at our goal yet, but working together we are rapidly changing the future of this disease. It is my privilege to work with you for a better day each day and a tomorrow without pulmonary hypertension.-Rino Aldrighetti, PHA President"

Governance

BOARD CHAIR

Stephen White MD

Professor of Medicine, University of Michigan, Director, Pulmonary Hypertension Program at University of Michigan

Term: June 2012 - June 2014

BOARD LEADERSHIP PRACTICES

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RESPONSE NOT PROVIDED

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?


RESPONSE NOT PROVIDED

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


RESPONSE NOT PROVIDED

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?