Programs

  • Program 1 [2020]

    ***ADVOCATE FOR THE PH COMMUNITY*** - PROVIDED PH COMMUNITY MEMBERS WITH THE TOOLS TO CALL, WRITE, AND MAKE VIRTUAL VISITS WITH THEIR MEMBERS OF CONGRESS DURING THE COVID-19 PUBLIC HEALTH EMERGENCY. 450 ADVOCATES SENT A TOTAL OF 1,575 MESSAGES TO 300+ MEMBERS OF CONGRESS. 2020 ADVOCACY SUCCESSES INCLUDED ROBUST FUNDING FOR PH RESEARCH AT THE NATIONAL INSTITUTES OF HEALTH; PASSAGE OF THE NO SURPRISES ACT TO ELIMINATE SURPRISE MEDICAL BILLS; EXPANDED ACCESS TO TELEHEALTH DURING THE COVID-19 PANDEMIC AND INCREASED FLEXIBILITY ON OXYGEN DELIVERY AND REMS TESTING REQUIREMENTS DURING THE COVID-19 PANDEMIC.RAISED PUBLIC AND COMMUNITY AWARENESS THROUGH PSAS AND MEDIA OUTREACH (176 MILLION+ IMPRESSIONS), SOCIAL MEDIA (3,548,299 IMPRESSIONS), PHANEWS E-NEWSLETTER (14,935 WEEKLY SUBSCRIBERS), PHASSOCIATION.ORG (1,377,955 ANNUAL VISITS), AND DISTRIBUTED 4 ISSUES OF PATHLIGHT MAGAZINE (4,200 ANNUAL SUBSCRIBERS).***EMPOWER PATIENTS AND CAREGIVERS***:PROVIDED A SERIES OF 18 VIRTUAL TOWN HALLS ADDRESSING VARIOUS TOPICS RELATED TO COVID-19 ENTITLED "PHA CONNECTS:COVID-19 AND YOUR HEALTH" ALONG WITH CURATED CONTENT ON A NEW COVID-19 WEBPAGE. PROVIDED PEER SUPPORT THROUGH 190 SUPPORT GROUPS AND 375 MEETINGS NATIONWIDE, HELPED 802 NEWLY DIAGNOSED PATIENTS THROUGH OUR ROADMAP TO HOPE, AND EDUCATED PATIENTS AND CAREGIVERS THROUGH OUR ONLINE PHA CLASSROOM PLATFORM. DISTRIBUTED OVER 300 PEDIATRIC RESOURCE GUIDES TO PEDIATRIC CENTERS AND FAMILIES.***PROMOTE QUALITY PATIENT CARE***:OFFERED 33 NEW CONTINUING EDUCATION COURSES TO PHA ONLINE UNIVERSITY USERS, WHO ENROLLED IN 2,726 COURSES. PROVIDED 840 HOURS OF LIVE HEALTHCARE PROFESSIONAL EDUCATION THROUGH PHA MEDICAL EDUCATION ON-DEMAND AND THE PHA PRECEPTORSHIP PROGRAM.***CATALYZE RESEARCH FOR A CURE***:HAD 29,832 VISITORS TO PHA'S ONLINE MEDICAL JOURNAL, ADVANCESINPH.ORG.
    Geographies
    Not indicated
    Dates
    Jan 1, 2020 – Dec 31, 2020
    Source
    990
    No causes provided
    No populations provided
    –
    $2.9M

  • Patient Education and Support for PH

    IN 2023, PHA PRODUCED A VARIETY OF EDUCATIONAL RESOURCES FOR PH PATIENTS AND THEIR FAMILIES INCLUDING 24 VIDEOS REPRESENTING A MIX OF LIVE WEBINARS AND PRE-RECORDED CONTENT, IN-PERSON LEARNING DAYS IN SAN DIEGO AND BOSTON, AND A SPANISH TRANSLATION OF OUR GUIDE FOR NEWLY DIAGNOSED PATIENTS, NAVIGATING PULMONARY HYPERTENSION. PHA SUPPORT GROUPS HELD 351 MEETINGS SERVING 4,353 ATTENDEES (NON-UNIQUE). VOLUNTEERS STAFFING PHA'S PATIENT-TO-PATINET SUPPORT LINE RESPONDED TO 100-150 CALLS PER MONTH, AND PHA LAUNCHED A 10TH VOLUNTEER-MODERATED FACEBOOK PAGE, THIS ONE FOCUING ON TRANSPLANT. PH ADVOCATES SENT MORE THAN 700 MESSAGES TO CONGRESS, REACHING 235 LEGISLATIVE OFFICES.
    Geographies
    Not indicated
    Dates
    Jan 1, 2023 – Dec 31, 2023
    Source
    990
    No causes provided
    No populations provided
    –
    $4.4M

  • Pulmonary Hypertension Association Registry

    PULMONARY HYPERTENSION ASSOCIATION REGISTRY (PHAR): ACCREDITED PHCC'S HAVE AN OPPORTUNITY TO PARTICIPATE IN PHAR AS BOTH A QUALITY IMPROVEMENT PROCESS AND RESEARCH ACTIVITY. A PATIENT REGISTRY IS AN ORGANIZED SYSTEM THAT COLLECTS DATA TO EVALUATE CERTAIN OUTCOMES FOR A POPULATION OF PEOPLE WITH A MEDICAL CONDITION AND IS A USEFUL TOOL FOR QUALITY IMPROVEMENT OF CARE AND FOR RESEARCH OF RARE DISEASES SUCH AS PH. PHAR COLLECTS DATA FROM WHO GROUP 1 PH (PULMONARY ARTERIAL HYPERTENSIONPAH) AND WHO GROUP 4 PH (CHRONIC THROMBOEMBOLIC PULMONARY HYPERTENSIONCTEPH) WHO ARE STARTING EVALUATION AND/OR TREATMENT AT AN ACCREDITED PHCC. DATA IS COLLECTED IN CONJUCNTION WITH ROUTINE PH CARE TEAMVISITS APPROXIMATELY EVERY 3-6 MONTHS. AT THE END OF 2023, THERE WERE 71 CENTERS PARTICIPATING AND 2,834 PATIENTS EVER ENROLLED IN PHAR.
    Geographies
    Not indicated
    Dates
    Jan 1, 2023 – Dec 31, 2023
    Source
    990
    No causes provided
    No populations provided
    –
    $765.6K