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Pulmonary Hypertension Association Inc Organization Name provided in the GuideStar Exchange* as of 03/14/2013: Pulmonary Hypertension Association Inc

Organization Name as listed in the IRS Business Master File as of 07/14/2014: PULMONARY HYPERTENSION ASSOCIATION INC

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Silver Spring, MD
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GuideStar Summary

&1002; GuideStar Exchange Committed to transparency ?
This organization is a Silver-level GuideStar Exchange participant, demonstrating its commitment to transparency.

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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2012, 2011, and 2010 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

Pulmonary Hypertension Association Inc Organization Name provided in the GuideStar Exchange* as of 03/14/2013: Pulmonary Hypertension Association Inc

Organization Name as listed in the IRS Business Master File as of 07/14/2014: PULMONARY HYPERTENSION ASSOCIATION INC

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Physical Address: Silver Spring, MD 20910 
EIN: 65-0880021
Web URL: www.PHAssociation.org 
Blog URL: pharino.blogspot.com/ 
NTEE Category: G Disease, Disorders, Medical Disciplines
G45 Lung
G Disease, Disorders, Medical Disciplines
G01 Alliance/Advocacy Organizations
G Disease, Disorders, Medical Disciplines
G80 Specifically Named Diseases
Ruling Year: 1999 
How This Organization Is Funded: Contributions (incl. restricted funds) - $5,773,139
Conference - $1,778,931
Grants - $349,300


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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.

Legitimacy Information

This organization is registered with the IRS.

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

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Annual Revenue & Expenses

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March 2013)

Fiscal Year Starting: January 1, 2011
Fiscal Year Ending: December 31, 2011

Total Revenue $10,627,413
Total Expenses $7,225,815

Revenue & Expenses

(GuideStar Exchange,
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March 2013)

Fiscal Year Starting: January 1, 2011
Fiscal Year Ending: December 31, 2011

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar website is an ongoing process.

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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership

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March 2013)

Mr. Rino Aldrighetti

Term:

Since Jan 1999

Profile:

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.

Leadership Statement:

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 four 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

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March 2013)

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Board Co-Chair

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Board Leadership Practices (GuideStar Exchange,
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Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

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 ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in March 2013

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Programs

Program: Patient and Medical Professional Services (GuideStar Exchange,
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March 2013)

Budget:
$3,603,064
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
General Public/Unspecified

Program Description:

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.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: Research (GuideStar Exchange,
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March 2013)

Budget:
$548,500
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
General Public/Unspecified

Program Description:

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

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

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Impact Summary from the Nonprofit

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.
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