Early Intervention Gave Me HopeWhen I first heard, "Your child has a global developmental delay," my heart shattered. At 22, a new and young mom, I...reactions1comment
Calling Out with GraceI try to approach life by considering others' perspectives, not just mine. Sometimes, though, I fail at this. As a rare disease...reactions5comments
Disclosing Rare Disease NeedsWhen living with a rare disease, how often do you disclose your needs? Daily? Weekly? Monthly? Living with a rare disease usually...reactions2comments
My Child May Have a Rare Disease, but I Still Dream Big Dreams for Her15 years ago, I became the mother of a daughter who lives with a rare disease. My daughter has a rare disease...reactions3comments
10 Empowering Tips to Prepare Your Child Living With a Rare Disease for CollegeI want to talk to you about something close to my heart – preparing your high school child living with a rare...reactions5comments
Rare Disease, Death, and No Clear-cut AnswersI 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 EducationSending my child to a specialized school for special needs has been a deeply emotional journey, marked by feelings ranging from hope...reactions3comments
I Thought They Understood: Living With An Invisible DiseaseRecently, 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 DiseaseI 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 MissionOur 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 MMNBy 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 Good Friend to Someone Living With a Rare DiseaseWhen 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 BurnoutWith a rare disease, it seems it doesn't take much for us to enter the world of becoming a complex rare disease...reactionscomments
How to Advocate for Yourself in Social Situations With a Rare DiseaseLearning how to advocate for yourself can be challenging. Sticking up for yourself in social situations is a journey. Here are a...reactions4comments
How to Deal With Letdowns in Your Awareness EffortsAs 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 DiseaseFinding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with...reactionscomments
When Living With a Rare Disease Negatively Affects Sex LifeSigh… I hesitated writing about this topic out of the initial shame I felt in even having gone through any of what...reactions5comments
The Power of Friendship in the Rare Disease Community: 3 Reasons to ConnectLiving with a rare disease can often make individuals feel isolated and misunderstood. However, in this vast and interconnected world, nobody should...reactionscomments
Reach for the Stars! Why Media Representation MattersRecently, I had the privilege of attending Portland Pride. The weekend was jam-packed with all sorts of events and parties celebrating the...reactions3comments
Managing Overwhelm: Giving Ourselves Permission to Take a MomentReacting versus responding. There's a difference between them that can be ignored or forgotten. Reacting is that gut punch reflex that tells...reactions2comments
