Are Forums Still Relevant in the Social Media Age?One of the most exciting parts of the advent of the internet was the ability to quickly communicate with others from around...reactionscomments
FDA Approves Gene Therapy: A Rare Disease Parent Advocate Reflects on Hope and Challenges AheadToday, I want to share with you the mix of emotions that have flooded my heart as a 15-year rare disease parent...reactions3comments
Mourning the Loss of the Old MeI’m often asked, “How did you come to terms with how your rare disease changed your life?” or “How did you mourn...reactionscomments
Summer With Sun SensitivityI love summer — the sunny weather, staying light outside later, and vacations. I live in an area filled with parks, trails...reactionscomments
Do You Take Rare Disease Rest Days?As a person who suffers from a rare and chronic disease, every day is a calculation dependent on my energy levels and...reactions2comments
Caregiving, Advocacy, and the Drive to Keep GoingIf you are a caregiver or a parent of a child with a rare disease, do you ever feel alone, confused, or...reactions1comment
How Educating Myself About Treatments Probably Saved My Lungs (If Not My Life)The day I was diagnosed with MAC lung disease, alarmingly, my pulmonary doctor's first question to me after confirming the diagnosis was,"How...reactions9comments
Groin Stronger: How My Body Is Learning to Trust Itself AgainWhen I injured my groin putting on a pair of pajamas last year, I had no idea it would lead to a...reactionscomments
When Rare Disease Needs Don't Make Sense to OthersLiving with a rare disease comes along with many complications – some medical, some financial, some psychological, and some social. In my...reactions4comments
'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...reactions5comments
