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...Reactions0reactionsComments0 comments
Complications of Primary Biliary Cholangitis: What to KnowPrimary 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...Reactions0reactionsComments0 comments
10 Things I Wish People Understood About Rare DiseasesBeing 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...Reactions0reactionsComments0 comments
Rare Disease InternationalAs 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...Reactions0reactionsComments0 comments
'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...Reactions0reactionsComments0 comments
Medicaid Needs to Do Better for Rare Patients and FamiliesI 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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
Bowled Over Again (in a Good Way!): Being Proactive With My Health GoalsMy 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...Reactions0reactionsComments0 comments
5 Rare Life Challenges: A Caregiver PerspectiveAs 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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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)...Reactions0reactionsComments0 comments
How to Care for Someone With Congenital Adrenal HyperplasiaCaring for someone with congenital adrenal hyperplasia (CAH) is difficult. A CAH diagnosis can feel overwhelming since it is a lifelong genetic condition without a cure. But with the right...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
Tips for Finding the Right DoctorFinding 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...Reactions0reactionsComments0 comments
Parental Partnership: Supporting Families With a Child Affected by a Rare DiseaseWhen I became a mother at 26 years old and my husband a father at 27 years old, we learned that the future ahead of us would be characterized by...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments1 comments
Understanding Primary Biliary CholangitisPrimary biliary cholangitis (PBC) is a chronic condition that affects the liver. Chronic means that it lasts for life. It is also progressive, which means it can get worse over...Reactions0reactionsComments0 comments
3 Ways I Spend Quality Time With Multiple Kids as a Rare Disease CaregiverMy 3 children are nothing alike. My oldest is a sweet and laid-back growing boy who is medically complex and living with a rare disease. My middle is a high-energy...Reactions0reactionsComments0 comments
Understanding Congenital Adrenal HyperplasiaCongenital adrenal hyperplasia (CAH) is a group of rare genetic disorders that affect the adrenal glands. The adrenal glands are 2 walnut-sized organs located above the kidneys. They produce essential...Reactions0reactionsComments0 comments
