Programs

  • Patient Engagement and Resources

    STRENGTHENED AND EXPANDED PATIENT RESOURCES FACILITATED 15 DIRECT CONNECT VIRTUAL MEETINGS TO CONNECT PATIENTS TO ONE ANOTHER CENTERED AROUND TOPICS OF IMPORTANCE TO OUR COMMUNITY. COMPLETED A DOWNLOADABLE FAMILY PLANNING GUIDE AS A RESOURCE FOR PATIENTS LIVING WITH OUR RARE GENETIC KIDNEY DISEASE, LED BY THE EFFORTS OF OUR EMERGING LEADERSHIP COUNCIL OF 10 VOLUNTEERS WHO HELP ADDRESS THE UNMET NEEDS OF PATIENTS IN THEIR 20S AND 30S. EXPANDED OUR WEBSITE WITH NUMEROUS NEW PAGES, INCLUDING MENTAL HEALTH RESOURCES, PARENT/CAREGIVER TIPS, PODCAST APPEARANCES, AND MORE. IMPLEMENTED A 3-MONTH FOLLOW-UP SYSTEM FOR NEW MEMBERSHIP REGISTRANTS, WITH OUR PATIENT ENGAGEMENT COORDINATOR REACHING BACK OUT TO BE SURE NEW QUESTIONS ARE ANSWERED. COMPLETELY RESTRUCTURED PATIENT VOLUNTEER OPPORTUNITIES, INCLUDING NUMEROUS NEW WAYS TO HELP THE FOUNDATION, OR PARTICIPATE IN RESEARCH EFFORTS OVERSEEN BY MEMBERS OF ASFS SCIENTIFIC ADVISORY RESEARCH NETWORK.
    Geographies
    Not indicated
    Dates
    Jan 1, 2022 – Dec 31, 2022
    Source
    990
    No causes provided
    No populations provided
    –
    $422.7K