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.... By Tatiana Corbitt3 min readBookmark for laterReactions 0 reactions Comments0 comments
Rare Versus Under-diagnosed Diseases...I always do my best to welcome everyone to this space. We are stronger together.... By Jessica Hanson2 min readBookmark for laterReactions 0 reactions Comments0 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... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 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.... 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.... By Elle Cole3 min readBookmark for laterReactions 0 reactions Comments0 comments
Rare Disease International...There is a way to be able to relate to other people with disabilities in a generalized manner, of course.... By Tatiana Corbitt3 min readBookmark for laterReactions 0 reactions Comments0 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... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 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... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 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... By Dusty Terrill3 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... 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?... By Elle Cole3 min readBookmark for laterReactions 0 reactions Comments0 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 By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 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.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 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... 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... By RareDisease.net Team3 min readBookmark for laterReactions 0 reactions Comments0 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 By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments0 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... By Elle Cole4 min readBookmark for laterReactions 0 reactions Comments0 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... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments1 comments
3 Ways I Spend Quality Time With Multiple Kids as a Rare Disease Caregiver...My middle is a high-energy, intelligent boy and my youngest is a sassy little girl who just wants to be By Alex Gaudlap4 min readBookmark for laterReactions 0 reactions Comments0 comments
Understanding Congenital Adrenal Hyperplasia...before or after a baby is born, during childhood, or later in life.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments