Community Engagement Grants

Jacksonville Florida PKD Community Engagement and Advocacy

Recognizing the need for community-level initiatives, the Mayo Clinic Florida ADPKD Center of Excellence will host two events in Jacksonville to ensure ongoing support and education for the ADPKD community. Focusing on providing support and mental health resources to patients and families affected by ADPKD, the first event will include a support group meeting facilitated by licensed mental health professionals, a tour of the facilities, and ADPKD-friendly meals. The second event will focus on patient advocacy and community outreach, raising ADPKD awareness and providing educational workshops to the broader community by hosting a booth at Jacksonville community events.

Mayo Clinic Florida PKD center has established a multidisciplinary holistic integrative clinic for ADPKD patients to provide the latest advances in the management of ADPKD and other inherited renal diseases. The Mayo Clinic Florida PKD center is committed to bring innovation and advance the standard of care of ADPKD patients by providing such a holistic approach and providing comprehensives services including genetic testing and counseling, life coaching and emotional support, pain control and cyst reduction interventions, individualized approach in predicting onset of kidney failure and navigating the challenges of kidney failure, kidney transplantation including kidney and liver transplantations, specialized surgeries such as cyst aspiration/foam sclerotherapy, nephrectomy and partial hepatectomy, neurosurgical advances in management of intracranial aneurysms, advanced imaging techniques and biomarkers, innovation in delivering healthcare and bridge the gap in the limited healthcare access of underserved areas, biomarkers discovery, drug and novel therpautics discovery. The Mayo Clinic Florida campus has multiple PKD champions in the various specialties to deliver comprehensive care including nephrology, hepatology, kidney and liver transplant, radiology, interventional radiology, general surgery, hepatobiliary surgery, urology, pain medicine, cardiology, interventional cardiology, neurosurgery, integrative medicine, social work, nutrition, psychology and psychiatry. Furthermore, the Mayo Clinic Florida PKD center is leading and participating in multiple PI-initiated and industry-initiated multicenter clinicla trials, and leading international initiative in advancing the clinical research and healthcare delivery for ADPKD patients.

Take PKD Out to the Ballgame

“Take PKD Out to the Ballgame” will raise public awareness of PKD at a Charleston RiverDogs baseball game, where PKD patients and families will receive free tickets, and other ticket sales will serve as a fundraiser for the local PKDF Chapter. This event will include an interactive session addressing PKD, community care challenges, and social determinants of health with the goal of fostering community engagement, generating enthusiasm for the local PKDF Chapter, and raising funds for future events.

The PKD clinic at MUSC is staffed by two Nephrologists: Dr. Josh Lipschutz, who is the Renal Division Director and has a basic science Lab that has been continuously federally funded for over twenty years to study PKD, and Dr. Roberto Pisoni, who has extensive experience in PKD clinical trials including being the site Director for the REPRISE Study. MUSC offers a full service PKD clinic that covers all aspects of care from diagnosis, to prescription of tolvaptan when appropriate, to dialysis and transplant as needed.

Community Engagement Online Seminar and Podcast for Patients with ADPKD

Combining medical knowledge and patient experience, this project strives to address important topics for PKD patients and will consist of a live online seminar and quarterly podcasts. Together these will delve into medical management and patient experiences concerning PKD diagnosis, treatment, nutrition, family planning, and pediatric PKD. Additionally, the podcast will feature a patient and clinician speaker, providing recordings in both English and Spanish.

Our ADPKD clinic offers comprehensive care for the ADPKD patient and their families. Our goal is to offer high quality nephrology care, ADPKD treatment, and access to multiple specialities including hepatology, pediatric nephrology and urology.

St. Louis Community Engagement

The SSM Saint Louis University Hospital will sponsor a table at the Mid-Missouri Kidney Walk, where they will engage with ADPKD patients and offer them a better understanding of their diagnosis, treatment options, available resources, and guidance in navigating complex medical systems. Striving to bridge gaps in the transition of care, brochures containing contact information for clinics and patient navigator services will be distributed to nephrologist offices and dialysis units in rural Missouri.

SSM Saint Louis University Hospital Polycystic Kidney Diseases (PKD) center brings together ADPKD-focused specialists from many disciplines of care to manage the complexities that ADPKD patients face at every stage of disease. Our ADPKD expert nephrologists see patients in both outpatient and hospital settings and work with pediatric nephrologists, radiologists, hepatologists, pain specialists, genetic counselors, dieticians, urologists, cardiologists, transplant surgeons, liver surgeons, neurologists, neurosurgeons, psychiatrists and social workers to provide comprehensive care for ADPKD patients. We have research programs targeted toward different ADPKD patient stages that are designed to improve health across many dimensions of this challenging condition.

Kundalini Yoga to Support the Health of PKD Patients

Focusing on the improvement of physical and mental well-being in the PKD community, this 52-week Kundalini Yoga program will emphasize kidney health and healing. As an online program available in English and Spanish, the goal is to reach broad, diverse communities and bridge traditional medicine with holistic health by highlighting benefits such as stress reduction, improved sleep, enhanced immune system, and overall wellness.

The Jack J. Dreyfus Outpatient Clinic at the Rogosin Institute is the primary site for new patient and follow-up patient visits. It is located at the NewYork-Presbyterian/Weill Cornell can1pus. Available services include collection of blood and urine samples and intravenous infusions of medications and fluids. Referrals are provided to consultants and services that are on-campus, including advanced kidney disease education and care, home and in-center dialysis, transplant medical and surgical specialists, and imaging facilities. The Susan R. Knafel PKD Center is a major component of our outpatient clinic. ADPKD patients have access to all of the above offerings, as well as a behavioral health program focused on the care of patients with chronic kidney disease. We also offer emotional support services and monthly patient PKD meet-ups with the local chapter of the PKD Foundation. ADPKD-specific research programs, including a large ADPKD Repository, have been ongoing for more than 20 years.

Development Of Targeted program via COMmunity engagement in ADPKD (DOTCOM ADPKD)

Aiming to address disparities among persons living with kidney disease, the DOTCOM ADPKD project consists of a survey to identify educational needs and barriers specific to ADPKD care in San Diego with a focus on Hispanic and Black populations. Based on the survey results, an educational seminar will be created to focus on the top identified areas, with the goal of improving patient understanding and access to care.

UCSD Nephrology has multiple clinical sites in San Diego County and beyond. The two sites listed above are in close proximity to the two UCSD Hosptals and cater to the majority of patients. Nephrologists with expertise and interest in ADPKD are present at these locations during 5 half day clinic sessions per week. These sites also have onsite RN, LVN trained in the specifics of ADPKD, include patient navigation, referrals for testing, enrollment for REMS, prior authorization approval and rapid turn around time for patient correspondence. Given the proximity to the hospital, imaging and subspecialty care including pain management, urology, hepatology, infectious disease, and neurosurgery are also located at the same location as nephrology. This allows for ADPKD patients with complex needs to be seen at one location.