Getting Emotions Out: Why It Matters and How to Do It...Emotion suppression is something I frequently witness, and at times, I am guilty of doing it myself. I know firsthand and am reminded by my own therapists that when we... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 comments
Active todayBiggest challenges you face in your current journey?...Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...Reactions 0 reactions Comments7 repliesCaregivingCopingTips & Advice
Paving the Way for Change...The journey of a mother like me (with a child diagnosed with a rare disease) comes with challenges most cannot relate to, and joys no one understands unless they live... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
Rare Diseases and Comorbidities: Which One Is Causing My Symptoms?!...Living with a rare disease can come with a variety of comorbidities. It is difficult to know what to expect in terms of comorbidities for a person with a rare... By Tatiana Corbitt3 min readBookmark for laterReactions 0 reactions Comments0 comments
Active 3 days agoPodcast opportunity for Rare Disease Patients...I have a podcast called Rare connections on YouTube. If any rare disease advocates are interested in talking about their rare condition please message me....Reactions 0 reactions Comments1 repliesAwareness
Active 7 days agoDBS and previous blood clots ...I have a complicated history of blood clots that put my scheduled dbs on hold for over 1.5 years. I'm now eligible for the surgery but at an extremely high...Reactions 0 reactions Comments0 repliesCoping
Rare Versus Under-diagnosed Diseases...I have 3 autoimmune conditions: celiac disease, Graves’ disease, and thyroid eye disease. One of these is categorized as a rare disease, and one is statistically under-diagnosed. Can you guess... By Jessica Hanson2 min readBookmark for laterReactions 0 reactions Comments0 comments
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
Active todayHow 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 Comments8 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
Active 3 days agoRare 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
