Resources
Organizations are listed for your benefit. Being listed is NOT an endorsement.
National Organizations and Resources For Patients
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A Guide to Surviving American Healthcare
I wrote this 21 chapter guide to help patients successfully approach every type of medical encounter including discussing how to protect yourself or loved ones if you're in a population group most vulnerable to medical harm, including misdiagnosis. -
American Academy of Pediatrics (AAP) – Healthy Children
Reliable resource of information for parents and caregivers about the health and well-being of children from infancy to young adulthood. -
Focuses on improving the health and well-being of older adults, providing guidelines and tools for safe and effective care.
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Use this resource to ensure that your healthcare professional is fully board certified and make informed decisions about which care providers to hire.
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The Community Improving Diagnosis in Medicine
Aims to enhance diagnostic accuracy and reduce errors in partnership with patients and families, professional healthcare community and all stakeholders.
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National Organization for Rare Disorders (NORD)
Rare disease resource offering education, advocacy, clinical trial information and assistance in navigating the healthcare system.
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Reliable resource for information about a wide range of pediatric health topics, focusing on well-being from childhood through adolescence.
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Patient Advocate Foundation (PAF)
A non-profit organization which provides patient advocates, case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses.
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A non-partisan network of dedicated patient safety activists and organizations united in the mission to enhance patient safety for all Americans.
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Reliable resource for health information specifically tailored for teenagers, addressing a wide range of adolescent health topics.
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Undiagnosed Diseases Network (UDN)
A National Institutes of Health initiative that helps patients with difficult to diagnose conditions identify their diagnoses and find appropriate care.
Tools for Patients & Families
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The Eight Characteristics of a Symptom Tool
This checklist is a tool to help patients tell their story well, concisely, and with all of the relevant information, so the doctor will consider the right diagnosis and treatment. -
The L.I.S.A. Pain Checklist.
Location • Intensity • Sensations • Action (LISA). Chronic pain advocates suggest using highly descriptive words and phrases to report pain. This guide replaces the numerical pain scale to help you describe your pain to your healthcare professional. -
The Misdiagnosis Poll
Please take the misdiagnosis poll and share your story with me. If you would like me to contact you, please let me know. -
Beers Criteria for Potentially Inappropriate Use in Older Adults
A clinical guide that identifies potentially inappropriate medications for seniors. Use it before starting a new medication or for discussion with your doctor about your medications. -
Greater National Advocates
A nonprofit resource connecting patients with independent patient advocates. -
Leapfrog Group
Independent nonprofit that scores hospitals on essential metrics including diagnostic quality and patient safety. How safe is your hospital?