About This Site
Learn about the mission, principles, and commitments of the DPKD Friend Network.
β Medical Safety Notice
This website provides health education for ADPKD patients and their families. It does not provide diagnosis, prescriptions, dosing, or individualized treatment plans. Always discuss medical decisions with your nephrologist. In emergencies, seek immediate medical care or call your local emergency number.
Our Purpose
The DPKD Friend Network is a patient support website built for people and families affected by autosomal dominant polycystic kidney disease (ADPKD). Our purpose is to provide health education that helps you understand the disease, track changes, prepare for appointments, and improve quality of life.
Help patients understand ADPKD, actively manage the disease, prepare for appointments, and improve quality of life.
The content on this site is for health education only and is not a substitute for professional medical care. All medical decisions should be made together with your nephrologist.
What We Provide
- Disease knowledge β evidence-based information on ADPKD genetics, progression, and prognosis
- Lab indicator explanations β 19 key lab indicators with mechanisms, interpretation, stage-based patterns, and safety guidance
- Medication information β objective information on common medication classes, monitoring, and nephrotoxicity warnings
- Emergency signs β guidance on when to seek urgent medical care (aneurysm rupture, cyst infection, bleeding, anuria)
- Lifestyle guidance β blood pressure management, hydration, diet, and physical activity recommendations
What We Do NOT Provide
- We do not provide diagnosis
- We do not provide prescriptions or dosing recommendations
- We do not provide individualized treatment plans
- We do not rank or recommend specific hospitals or doctors
- We do not promise a cure or replace clinical treatment
- We do not use individual cases as a substitute for clinical evidence
Evidence Standards
Every medical article on this site follows these evidence standards:
- Source β the guideline, study, or authoritative body cited
- Evidence level β guideline / systematic review / RCT / observational study / expert opinion
- Applicable population β the patient group the content addresses
- Limitations β gaps and uncertainties in the current evidence
- Update date β when the content was last confirmed
Guideline recommendations and research hypotheses are presented separately. All numbers, thresholds, and incidence rates must be traceable to a specific source and version.
Limitations: Individual circumstances vary β always consult your nephrologist.
Privacy
Your health data stays in your browser
Personal management tools store data in your browser only β nothing is uploaded to a server. No tracking cookies are used.
Contact & Feedback
We welcome your feedback, corrections, and suggestions. If you have questions about content accuracy or want to report an error, please reach out.
- Guestbook: Leave a message in our guestbook
For medical questions, always consult your nephrologist β this website cannot provide individual medical advice.
Privacy
Personal health records used by the management tools are stored locally in your browser and are not uploaded to our servers.
Disclaimer
This website provides health education content for ADPKD patients and their families. It does not constitute medical advice, diagnosis, or treatment plans. All medical information should be discussed with your nephrologist. In emergencies, seek immediate medical care or call your local emergency number.
Content is reviewed and updated periodically, but medical knowledge continues to evolve. We cannot guarantee that all information is always current. Always rely on your nephrologist's advice and the latest clinical guidelines.