'It Takes a Village...' Building a Supportive Rare Disease VillageWhen you become a parent, people say you will have a village that will be there for you every step of the...reactionscomments
How Clinical Trials Are Transforming the Future for Rare Disease WarriorsPrior to becoming a rare disease caregiver, I must admit that I overlooked and even doubted the significance of clinical trials. Historical...reactionscomments
Fighting for Rare Disease Medication CoverageLiving with a rare disease comes with a variety of complications. Some of these complications are physical due to the medical nature...reactions3comments
The 2024 Social Health Awards ProgramEditorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards...reactionscomments
How I Gradually Changed My Relationship With Medical PTSDMy rare disease experiences began when I was 8 years old, and it wasn't long after that I developed medical post-traumatic stress...reactionscomments
Getting Emotions Out: Why It Matters and How to Do ItEmotion suppression is something I frequently witness, and at times, I am guilty of doing it myself. I know firsthand and am...reactionscomments
Paving the Way for ChangeThe journey of a mother like me (with a child diagnosed with a rare disease) comes with challenges most cannot relate to...reactionscomments
RareDisease.net Giveaway Terms and ConditionsThese Official Rules apply to any giveaway (or "Promotion") published on RAREDISEASE.NET, a Health Union ("Health Union" or "We") owned and operated...reactionscomments
Rare Versus Under-diagnosed DiseasesI have 3 autoimmune conditions: celiac disease, Graves’ disease, and thyroid eye disease. One of these is categorized as a rare disease...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...reactionscomments
Living Life With Rare Diseases: Giving Up vs Not Giving UpAs I continue forward in my healthcare journey as a person with multiple rare diseases, I have begun to accept that I...reactions8comments
Why I Am Scared to Own a Handicap Parking StickerEditor's Note: This article was written by Janeil Whitworth, a Health Leader living with cystic fibrosis. Read more of Janeil's articles at...reactions14comments
Thank You for Taking Our Survey!We appreciate you taking the time to answer all of our questions. Your responses will help us better understand life with a...reactionscomments
'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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
Groin Older: Aging With HemophiliaAs a child born in the mid-70s with hemophilia, I was part of a unique generation. Access to new treatments made a...reactions4comments
Groin Wiser: Adopting New Strategies to Manage My Rare DiseaseI recently wrote an article, Groin Older: Aging With Hemophilia, where I described my life with the bleeding disorder, hemophilia. My first...reactionscomments
