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What Causes PKD?
Health Complications
ARPKD and ADPKD
Diagnosis
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Kidney 101
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Understanding the Symptoms
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What Causes PKD?
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Health Complications
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ARPKD and ADPKD
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Ensuring better care for everyone with ADPKD
Program Goals
- To identify and recognize gaps in clinical care to improve ADPKD outcomes, encourage disease-specific management strategies, and improve health equity.
- To directly support the mission of the PKD Foundation by developing and maintaining mentoring relationships between recognized PKD experts and less experienced nephrologists and community specialists.
- To utilize patient education and engagement activities among the regional community to increase awareness of the disease and form relationships with their patient community.
- To advance research to improve the lives of patients with ADPKD and their families treated at centers and participate in the ADPKD Registry. Ultimately, clinical data collected through the Registry will provide evidence for creating standards of care in the United States and specialized PKD training for healthcare professionals.
Understanding ADPKD through research
Program Goals
- To identify and recognize gaps in clinical care to improve ADPKD outcomes, encourage disease-specific management strategies, and improve health equity.
- To directly support the mission of the PKD Foundation by developing and maintaining mentoring relationships between recognized PKD experts and less experienced nephrologists and community specialists.
- To utilize patient education and engagement activities among the regional community to increase awareness of the disease and form relationships with their patient community.
- To advance research to improve the lives of patients with ADPKD and their families treated at centers and participate in the ADPKD Registry. Ultimately, clinical data collected through the Registry will provide evidence for creating standards of care in the United States and specialized PKD training for healthcare professionals.
Educating and empowering the community
Program Goals
- To identify and recognize gaps in clinical care to improve ADPKD outcomes, encourage disease-specific management strategies, and improve health equity.
- To directly support the mission of the PKD Foundation by developing and maintaining mentoring relationships between recognized PKD experts and less experienced nephrologists and community specialists.
- To utilize patient education and engagement activities among the regional community to increase awareness of the disease and form relationships with their patient community.
- To advance research to improve the lives of patients with ADPKD and their families treated at centers and participate in the ADPKD Registry. Ultimately, clinical data collected through the Registry will provide evidence for creating standards of care in the United States and specialized PKD training for healthcare professionals.
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COE Care Team Expectations
A Center of Excellence will offer comprehensive diagnostic and therapeutic services with identified staff responsible for most services in each of the following disciplines:
- Nephrology
- Radiology
- Nutrition
- Hepatology
- Genetics
- Pain
- Patient navigator services
Non-Core Specialists
A Center of Excellence will offer comprehensive diagnostic and therapeutic services with identified staff responsible for most services in each of the following disciplines:
- Nephrology
- Radiology
- Nutrition
- Hepatology
- Genetics
- Pain
- Patient navigator services
Partners & Pediatric Clinics
A Center of Excellence will offer comprehensive diagnostic and therapeutic services with identified staff responsible for most services in each of the following disciplines:
- Nephrology
- Radiology
- Nutrition
- Hepatology
- Genetics
- Pain
- Patient navigator services
It's up to us
There’s a groundbreaking new way to change lives and provide hope. We have the power.
Build Your PKD Legacy
Leave a lasting legacy that will be remembered in the lives of those with PKD.
Newly Diagnosed
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Find a Community
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Resources
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Resources
Access educational resources as a patient, caregiver, provider, or donor in the world of PKD.
Research
Explore the research PKD Foundation has helped fund over the years in our mission to end PKD.
Advocacy
Your voice is vital to raising awareness of PKD and helping increase research funding to bring treatments and therapies to patients.
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Heedeok Han, M.D.
“Our COE designation has been tremendously positive for us, as it has elevated our ability to grow and continue to provide comprehensive, patient-centered care by uniting our multidisciplinary team and implementing best practices, which has directly improved outcomes for our PKD patients.”
Christina Cebrian
Cincinnati Children’s Hospital Medical Center
“The Cebrian lab is immensely grateful to the PKD Foundation donors that generously fund our project. None of our success would be possible without your contribution”
Michael Caplan
Yale
“The forward thinking funding that was provided to us by the PKD Foundation and its generous supporters have allowed us to test our ideas, develop proof of concept, and explore their potential for translation to pre-clinical tests of efficacy”
Zhang Li
UAB
“It was my honor to have this fellowship to support my postdoctoral training. I would like to give special thanks the donors of the PKD Foundation.”
Yan Zhang
Michigan Technological University
“We appreciate the generous support from the PKD Foundation to allow us to perform PKD research at Michigan Tech”
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| $1.5bIn research funded | 1300+Research projects |
| 42+Years of giving hope | 50+Local chapters |
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- Ensuring better care for all individuals with ADPKD
- Understanding ADPKD through research
- Educating and empowering the community
While we advance research and push for a cure, the PKD Foundation is also committed to improving lives right now. We saw a need. So we launched a program to help you find where to access next-level ADPKD care.
This elite designation for nephrology practices and clinics helps those affected by ADPKD better manage their disease, maintain and improve their quality of life, and plan for the future.
We’re improving access to specialized care so you can manage your ADPKD the best way possible.