This page is for the patient, willing to learn provider. The provider willing to listen, with an open mind, and learn from what may seem foreign or different than what they’ve ever seen before.
30 million people within the US live with a rare disease. There are over 10,000 rare diseases diagnosed in the US. There is so much to learn and so many voices with lived experiences that are waiting to be heard.. to be learned from.. and are hoping their experience helps better the diagnostic oddyssey and treatment pathway for the ones that come after them. Thank you for being here and caring about evidence based medicine and supporting the individuals have contributed to this space.
Whether you’re a medical student, specialist, emergency department nurse caring for a patient with complex or unusual symptoms, or a family practice provider seeking to better support a patient with seemingly unrelated concerns, this page is for you.
Here, you’ll find information on comorbid conditions, peer-reviewed research highlighting overlapping diagnoses and common misdiagnoses, and links to journals that challenge conventional teaching. Together, these resources underscore an important truth: what we’ve been taught doesn’t always capture the full picture, especially when caring for medically complex patients.
The information shared here is not intended to replace clinical judgment or established guidelines. Rather, it is offered as a supplement- bringing together research, lived experience, and observed patterns that may support earlier recognition, improved communication, and more effective care for complex patients.
What We Wished Our Doctors Would’ve Heard
Collecting patient stories to share lived experience and peer reviewed studies to back up these experiences.
What We Wish We Would’ve Said When We Felt Dismissed
Collecting patient stories to share lived experiences and peer reviewed studies to back up these experiences.
The One Critical Mistake That My Physician Made That Nearly Cost Me My Life
Collecting patient stories to share lived experiences and peer reviewed studies to back up these experiences.
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