Rare Diseases and Comorbidities: Which One Is Causing My Symptoms?!...It is difficult to know what to expect in terms of comorbidities for a person with a rare disease....Reactions0reactionsComments0 comments
Rare Versus Under-diagnosed Diseases...I always do my best to welcome everyone to this space. We are stronger together....Reactions0reactionsComments0 comments
Life as a Rare Disease Parent: My Motherhood Journey...I manage to continue my aggressive determination to be a strength for my son and my family. On my good...Reactions0reactionsComments0 comments
Cast Your Votes! What Do You Want to See on RareDisease.net?...Our goal is to provide information, validation, and support to anyone affected by a rare disease....Reactions0reactionsComments0 comments
Complications of Primary Biliary Cholangitis: What to Know...People with PBC may have deficiencies in vitamins like A, D, E, and K....Reactions0reactionsComments0 comments
10 Things I Wish People Understood About Rare Diseases...Being a caregiver to someone with a rare disease can be a complex journey....Reactions0reactionsComments0 comments
Rare Disease International...There is a way to be able to relate to other people with disabilities in a generalized manner, of course....Reactions0reactionsComments0 comments
'I Have What?!' What Happens When a New Diagnosis Does Not Make Sense?...I don't care what it is; I just want to know. But then I had a diagnosis experience that started in...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
How I Travel With a Chronic Illness...My spirit is still very much alive, and I so desperately want to live. To me, traveling is cathartic, an expression...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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?...Reactions0reactionsComments0 comments
Role Reversal and the Patient-Caregiver Relationship...My partner understands, too, that there may be times when he will need to act as a caregiver to my parents Reactions0reactionsComments0 comments
How to Care for Someone With Congenital Adrenal Hyperplasia...It may present itself at birth, or symptoms could be noticed later on in childhood or early adulthood....Reactions0reactionsComments0 comments
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...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...Reactions0reactionsComments0 comments
Tips for Finding the Right Doctor...I could also reach out to friends in the local celiac disease community to ask if any of them have a doctor Reactions0reactionsComments0 comments
Parental Partnership: Supporting Families With a Child Affected by a Rare Disease...When I became a mother at 26 years old and my husband a father at 27 years old, we learned that...Reactions0reactionsComments0 comments
Coordinating Care With a Rare Disease...If they are not educated enough to do so, and are not interested in learning or do not have the capacity to...Reactions0reactionsComments1 comments
Understanding Primary Biliary Cholangitis...It mostly impacts women, and it is most common in women between the ages of 45 and 65....Reactions0reactionsComments0 comments
