Priority Area: Enhance Advocacy

Goals Objectives
Educate all congressional leaders about PHA's goals and opportunities
  • Increase the 435 Campaign to 250 members.
  • 85% of 435 Campaign members to complete three congressional contacts annually.
  • At least 20 Members of Congress will receive in-person constituent visits annually from 435 Campaign members.
  • Secure passages of the Tom Lantos PH Research and Education Act in the 111th Congress.
Increase federal funding for PH research.
  • Increase the number and enhance the quality of PH-related research proposals to NIH.
Advocate for corporate and governmental policy solutions that improve quality of life for PH patients.
  • Ensure that recommendations for equalizing transplantation eligibility and appeals processes for PH are working.
  • Join coalition-led efforts through the National Organization of Rare Diseases to advance patient-supportive oxygen policies.
  • Ensure regular infusion of PH education to insurance company decision-makers.
  • Develop appropriate PH-related language for inclusion in Social Security adjudication.

Priority Area: Increase Domestic and International Reach of PH Community

Goals Objectives
Provide PHA services to all patients and family members in need.
  • Realize and sustain a PHA membership reflective of 50% of the estimated U.S. PH patient population.
  • Increase the depth of members' involvement, measured by participation in 435 Campaign, PHAware, and special events.
Increase physician, researcher and allied health involvement in PHA's mission.
  • Increase membership in PH Clinicians and Researchers (PHCR) and PH Professional Network (PHPN) (formerly PH Resource Network) by 10% per year.
Increase domestic awareness of pulmonary hypertension.
  • Develop a PH-focused, national awareness campaign.
  • Double the PHAware grassroots effort to 200 participants.
Increase international awareness of pulmonary hypertension.
  • Increase the respective number of international participants in the PHPN by 20% and PHCR by 10%.
  • Provide assistance as requested to support the first PHA Europe Conference in 2011.
  • Assess international interest in a World PH Awareness Day.
Enhance information sharing among existing PH associations worldwide.
  • Distribute the medical journal through all PH associations.
  • Collect and redistribute materials and tools among existing associations.

Priority Area: Develop and Refine Patient-Serving Programs

Goals  Objectives 
Create programs/services for targeted PH constituencies.
  • Create specific programming and resources for: (a) young adults, (b) newly diagnosed, (c) secondary PH, (d) caregivers of children and adults, and (e) new members. 
Improve timely patient access to information.
  • Increase the number of patients able to attend the biennial conference on scholarship by 5% over the 2008 conference.
  • Ensure that all patients connected with PHA are aware of the Survivial Guide and other PHA resources as measured by the purchase of 2,000 Survival Guides annually and/or future patient surveys. 
Enhance the role of PHA support groups.
  • Increase Support Group leaders' involvement in advocacy & awareness efforts as measured by participation in the 435 Campaign and PHAware.
  • Provide Support Group leader training to 100% of untrained support group leaders annually. 
Broaden support for psychosocial issues among PHA constituencies.
  • Ensure resources are available for the following groups: (a) patients grieving past lifestyle, (b) bereaved survivors, (c) support group leaders, and (d) caregivers.

Priority Area: Expand Medical Education

Goals Objectives
Expedite the time from PH symptom onset to diagnosis.
  • Increase the number of U.S. medical providers who are trained in PH detection, evaluation, referral and treatment by launching and sustaining the Medical Education Program.
  • Promote medical education internationally.

Priority Area: Ensure Financial Capacity to Meet Organizational Goals

Goals Objectives 
Cultivate operational and research revenue sources that are diverse and sustainable.
  • Diversify revenue sources.
  • Generate endowment funding to support operations and research commitments.
  • Increase foundation revenue.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.