Rare Disease, Death, and No Clear-cut Answers...I have been fortunate to have my mother and grandfather to share my rare disease journey with me, as one of our...reactions2comments
Caring for a Child With a Rare Disease: Conventional Versus Specialized Education...Sending my child to a specialized school for special needs has been a deeply emotional journey, marked by feelings ranging from hope...reactions3comments
What’s wrong with my daughter...Hi my name is araselys. My daughter’s name is aniah. Aniah is 16, I took her to the hospital a year ago...reactions4replies
Experimental treatments...I have TOS (thoracic outlet syndrome). Unfortunately, the ONLY treatment that I have gotten any relief from my symptoms with is dry...reactions4replies
I Thought They Understood: Living With An Invisible Disease...Recently, I thought I had found a group of friends who would stick by my side, who understood what I was going...reactions27comments
Changing Scarcity Mindset to a Growth Mindset With Rare Disease...I have been learning more about scarcity mindset, and it got me thinking about how common and easy it is to fall...reactions2comments
From Heartbreak to Hope: Turning Our Rare Disease Journey Into a Mission...Our rare disease journey began with concerns that the pediatrician dismissed as normal quirks. My child was slow to reach milestones, but...reactions1comment
Sponsored: Share Your Story and Help Raise Awareness for MMN...By argenx Living with multifocal motor neuropathy (MMN) can be a challenge. Everyone’s MMN journey is different—from diagnosis to symptoms to finding...
How to Be a Great Friend to Someone Living With a Rare Disease...What characteristics, behaviors, and kindnesses mean the most to you from people who are not living with a rare disease?...reactions6repliesFriends & FamilyCoping
How to Be a Good Friend to Someone Living With a Rare Disease...When I think about the characteristics I need in a friend due to my rare diseases, I mostly need someone who is...reactions4comments
Tips for Reducing Medical Appointment Burnout...With a rare disease, it seems it doesn't take much for us to enter the world of becoming a complex rare disease...reactionscomments
Coping...I'm newly diagnosed and my steroids We're reduced to soon which caused a flare up. Been advised to up steroids which I...reactions2repliesNewly DiagnosedCoping
Romantic Partnerships...Has your rare disease impacted your romantic relationships? What challenges or successes have you encountered?...reactions19replies
Have you ever seen your rare disease represented in the media? ...How did it make you feel? Did you feel it was an accurate depiction? Tell us more about what you would like...reactions6repliesAwareness
How to Advocate for Yourself in Social Situations With a Rare Disease...Learning how to advocate for yourself can be challenging. It's certainly a learning process, and it is often difficult to stick up...reactions3comments
The Career Debacle...Managing a career with a rare disease can be challenging, especially if you have just learned about the condition, like my ultra-rare...reactions3comments
Rare Blood Cancer: Waldemstroms Macglobanemia...Living with a rare blood cancer is challenging. On a BTK Inhibitor has to be careful of side effects. Trips to Boston...reactions2replies
How to Deal With Letdowns in Your Awareness Efforts...As I shared in a previous article, rare disease advocacy can include writing and requesting proclamations. Proclamations can be made by organizations...reactionscomments
Job-Seeking as a Caregiver for a Child With a Rare Disease...Finding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with...reactionscomments
