A Caregiver's Guide to Explaining a Rare Disease DiagnosisAs our family's rare disease community (VAMP2) continues to grow, I am often frustrated with the healthcare providers who are giving this...
Patient Advocacy: Tips for Communicating with Your DoctorI once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider warned that being a "squeaky...reactionscomments
Journaling As a Daily Tool for Rare DiseaseWhen I was first diagnosed with narcolepsy, I felt like I was drowning. I floundered in confusion. All of these new symptoms...reactions12comments
Featured forum Dietary ChangesHi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an...reactions12replies
Featured story It's Just the Way You AreI just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went...reactions3comments
