PHA STRATEGIC PLAN

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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NORD

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.