Life as a Rare Disease Parent: My Motherhood Journey...My motherhood journey has come with many unique challenges that most other mothers cannot relate to. It’s been a deep journey that often surprises me and allows me to find... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
Cast Your Votes! What Do You Want to See on RareDisease.net?...RareDisease.net is an online community where you can read articles by Health Leaders, connect with others in forums, discover others' stories and share you own, and much more! Our goal... By RareDisease.net Team1 min readBookmark for laterReactions 0 reactions Comments0 comments
10 Things I Wish People Understood About Rare Diseases...Being a caregiver to someone with a rare disease can be a complex journey. It not only alters the life of the person affected, but it also impacts the lives... By Elle Cole3 min readBookmark for laterReactions 0 reactions Comments0 comments
Rare Disease International...As a person living with a rare disease, it can be difficult to find other people who also suffer from the same condition. Not knowing people who can relate to... By Tatiana Corbitt3 min readBookmark for laterReactions 0 reactions Comments0 comments
How can we support you?...What information do you hope to find on our site? Is there anything in the rare community as a whole you would like to see more of?...Reactions 0 reactions Comments11 repliesAwarenessCopingTips & Advice
'I Have What?!' What Happens When a New Diagnosis Does Not Make Sense?...As a complex rare disease patient, I'm used to receiving new diagnoses and even reaching the point of desperately wanting a diagnosis just so I can have a name for... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Ehlers Danlos and Epydermilosis Bulosis ...I was born in 1958. I had two rare diseases Ehlers Danlos and Epydermilosis Bulosis but neither were severe.It took until 2004 to see a Geniticist before they were both...Reactions 0 reactions Comments1 repliesDiagnosisAwareness
Medicaid Needs to Do Better for Rare Patients and Families...I recently took my 3 children to their pediatrician for the last time before our new insurance kicked in at the beginning of the year. Unfortunately, because of circumstances with... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
Rare Diagnosis Experiences...How long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...Reactions 0 reactions Comments10 repliesNewly DiagnosedSymptomsDiagnosis
How I Travel With a Chronic Illness..."Still round the corner, there may wait, a new road or a secret gate." – J.R.R. Tolkien Living in a body with a chronic illness is a challenge. My spirit... By Dusty Terrill3 min readBookmark for laterReactions 0 reactions Comments0 comments
Jesse Mercury...Jesse Mercury is the host of the Major Pain podcast, where he interviews people living with chronic illness and disability. The goal of the show is to create community around... By Editorial Team 1 min readBookmark for later
Bowled Over Again (in a Good Way!): Being Proactive With My Health Goals...My arthritic left ankle is the thing that affects me the most where my bleeding disorder, hemophilia A, is concerned. Slight and not-so-slight bleeding into that joint over nearly 5... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
5 Rare Life Challenges: A Caregiver Perspective...As a rare mom, I do my best to hold my head high and remain positive. But the reality is, it's extremely hard. The general public is not well-educated on... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
How to Promote Legislative Advocacy for Rare Diseases...Can 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
Do you allow your child with a rare disease to go on overnight school field trips?...If so, what tips have worked for you and your child? How did you prepare your child and yourself for this experience? Please share your insights or personal anecdotes below....Reactions 0 reactions Comments0 repliesCaregivingTravel
Role Reversal and the Patient-Caregiver Relationship...I 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 laterReactions 0 reactions Comments0 comments
Patient with strange symptoms...I have a patient who has severe pain in her ear that extends down to the inside of her mouth and causes burning and what seems like nerve pain. She...Reactions 0 reactions Comments4 repliesDiagnosisTips & AdviceSymptoms
Founding a Rare Disease Non-profit: The Importance of Advocate Self-care...As 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
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 laterReactions 0 reactions Comments0 comments
Tips for Finding the Right Doctor...Finding the right doctor can be challenging for anyone, but it seems especially challenging for those of us in the rare disease community who are looking for specialists to help... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments0 comments
