Priority Area: Enhance Advocacy
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| 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.
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| Increase federal funding for PH research. |
- Increase the number and enhance the quality of PH-related research proposals to NIH.
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| 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.
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Priority Area: Increase Domestic and International Reach of PH Community
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| 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.
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| 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.
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| Increase domestic awareness of pulmonary hypertension. |
- Develop a PH-focused, national awareness campaign.
- Double the PHAware grassroots effort to 200 participants.
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| 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.
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| 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.
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Priority Area: Develop and Refine Patient-Serving Programs
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| 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.
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| 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.
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| 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.
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| 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.
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Priority Area: Expand Medical Education
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| 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.
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Priority Area: Ensure Financial Capacity to Meet Organizational Goals
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| 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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