Finding Joy While Raising a Child With a Rare DiseaseIt's hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still a...
Rare Diseases, Disability, and Self-Identity: I Am More Than My ConditionI didn't always see myself as someone living with a rare disease. For years, I fought to hold onto the life I had before my diagnosis. When my symptoms first...
Xanadu I or Don't I? A Rare Disease Roller Skating OdysseyIn the earliest days of the COVID-19 pandemic, my partner Gwenn and her friends decided to order roller skates and take a spin together around a cul-de-sac. It felt fun...
Finding Joy While Raising a Child With a Rare DiseaseIt's hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still a...
Rare Diseases, Disability, and Self-Identity: I Am More Than My ConditionI didn't always see myself as someone living with a rare disease. For years, I fought to hold onto the life I had before my diagnosis. When my symptoms first...
Xanadu I or Don't I? A Rare Disease Roller Skating OdysseyIn the earliest days of the COVID-19 pandemic, my partner Gwenn and her friends decided to order roller skates and take a spin together around a cul-de-sac. It felt fun...
Finding Joy While Raising a Child With a Rare DiseaseIt's hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still a...
Rare Diseases, Disability, and Self-Identity: I Am More Than My ConditionI didn't always see myself as someone living with a rare disease. For years, I fought to hold onto the life I had before my diagnosis. When my symptoms first...
Xanadu I or Don't I? A Rare Disease Roller Skating OdysseyIn the earliest days of the COVID-19 pandemic, my partner Gwenn and her friends decided to order roller skates and take a spin together around a cul-de-sac. It felt fun...
Journey to Chronic Rare Disease TreatmentLiving with a rare disease is difficult. Getting access to treatment for rare diseases can be inaccessible for many. Many rare disease medications are expensive and subject to price gouging...reactionscomments
Navigating Life with a Rare Disease: An Accessibility StoryThe most consistently bothersome aspect of living with hemophilia is my left ankle. Due to both minor and, on rare occasions, major bleeding into the joint, I have very little...reactions1comment
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 elevated level of phytanic and pristanic acid in...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 to doctors, or was taken, and never really...reactions3comments
