Living With Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a lifelong condition that causes inflammation in the bile ducts in the liver. Over time, this can cause serious liver damage, called cirrhosis. Living with...reactionscomments
Community Views: What Makes Us Unique...Living with a rare disease can sometimes feel all-consuming. It can take up so much of your time and mental bandwidth. But it is far from everything you are. To...reactionscomments
I have Myasthenia Gravis and Parkinsons...I would like to find someone else or a group that I can discuss my symptoms and problems with. Some of my symptoms kind of get "mixed up" with other...reactions4repliesCopingResearch & Clinical TrialsAwareness
Treating Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a long-term medical condition that impacts the liver. While PBC has no cure, treatments may help slow the disease. This may prevent complications or serious...reactionscomments
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...reactionscomments
FeaturedBiggest 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...reactions77repliesTips & AdviceCaregivingCoping
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...reactionscomments
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...reactionscomments
Podcast 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....reactions1replyAwareness
DBS 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...reactionsrepliesCoping
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...reactionscomments
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...reactionscomments
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...reactionscomments
Complications of Primary Biliary Cholangitis: What to Know...Primary biliary cholangitis (PBC) is a chronic condition that impacts the bile ducts in the liver. Although PBC primarily affects the liver, it can cause complications throughout the body. Many...reactionscomments
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...reactionscomments
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...reactionscomments
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?...reactions13repliesAwarenessTips & AdviceCoping
'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...reactionscomments
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...reactions2repliesDiagnosisAwareness
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...reactionscomments
