Role Reversal and the Patient-Caregiver RelationshipI have been a rare disease patient since my first rare disease diagnosis of familial adenomatous polyposis at age 8. My mother (who has the same rare disease as me),... By Jenny Jones2 min readBookmark for later
Voices in the Rare Disease Community: What's Your Story?Every day, we take in stories from the world around us. We consume them on social media. We read about them in books. We listen to them on podcasts. We... By RareDisease.net Team3 min readBookmark for later
Coordinating Care With a Rare DiseaseMany general medical practitioners are not educated about rare diseases. This can make it difficult for people with rare diseases to get access to diagnosis and treatment. It can also... By Tatiana Corbitt2 min readBookmark for later
Role Reversal and the Patient-Caregiver RelationshipI have been a rare disease patient since my first rare disease diagnosis of familial adenomatous polyposis at age 8. My mother (who has the same rare disease as me),... By Jenny Jones2 min readBookmark for later
Voices in the Rare Disease Community: What's Your Story?Every day, we take in stories from the world around us. We consume them on social media. We read about them in books. We listen to them on podcasts. We... By RareDisease.net Team3 min readBookmark for later
Coordinating Care With a Rare DiseaseMany general medical practitioners are not educated about rare diseases. This can make it difficult for people with rare diseases to get access to diagnosis and treatment. It can also... By Tatiana Corbitt2 min readBookmark for later
Role Reversal and the Patient-Caregiver RelationshipI have been a rare disease patient since my first rare disease diagnosis of familial adenomatous polyposis at age 8. My mother (who has the same rare disease as me),... By Jenny Jones2 min readBookmark for later
Voices in the Rare Disease Community: What's Your Story?Every day, we take in stories from the world around us. We consume them on social media. We read about them in books. We listen to them on podcasts. We... By RareDisease.net Team3 min readBookmark for later
Coordinating Care With a Rare DiseaseMany general medical practitioners are not educated about rare diseases. This can make it difficult for people with rare diseases to get access to diagnosis and treatment. It can also... By Tatiana Corbitt2 min readBookmark for later
How to Promote Legislative Advocacy for Rare DiseasesCan you imagine living with a condition so rare that it often feels like you are fighting a battle alone? The lack of resources, treatment options, and support can leave... By Elle Cole3 min readBookmark for laterReactions 0 reactions Comments0 comments
Founding a Rare Disease Non-profit: The Importance of Advocate Self-careAs an advocate, caregiver, and mom, I am guilty of running on autopilot and failing to acknowledge when my body and mind are extremely tired. Because what choice do I... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
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...Bookmark for laterReactions 0 reactions Comments0 comments
Will you take our In America survey and help others understand the true impact of rare diseases? To better understand the patient experience and realities of living with a rare disease, we are fielding our Rare Disease In America survey. By taking this anonymous survey, you can...Bookmark for laterReactions 0 reactions Comments0 replies