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
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
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
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
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
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...reactions2comments
Life as the Primary Caregiver: Insights from a Rare MomIn the rare disease space, a full-time caregiver of someone with a rare disease has a unique mindset. There is often compassion, love...reactionscomments
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
My Strategies for Living With a Rare Disease Long TermLiving with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line...reactions12comments
Fertility Preservation for Rare Disease WarriorsIn a time marked by heightened awareness and discord surrounding reproductive health, caregivers of children with rare diseases carry a unique burden...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
Benefits of Taking an Advocacy BreakSince becoming a rare disease mom, I have been relentlessly dedicated and solidly committed. However, more so now than ever, I have...reactions5comments
Dear Caregiver...As the sounds settle down for the night and your child falls asleep, your night is just beginning. You ensure that everything...reactions5comments
When You Don’t Want Advice on Your Rare DiseaseHow many times have you had to sit and listen to someone give you advice on living with your rare disease? Probably...reactions3comments
Grappling With the Possibility of Having Another Rare DiseaseMy mother has the same rare diseases that I have and among her many chronic health conditions, she also has worsening vision...reactions2comments
Parenting a Child With a Rare Disease and Reflecting on the Power of PauseThe day my precious daughter was diagnosed with a rare disease is recorded in my heart, forever reminding me of a story...reactions3comments
Tips for Finding the Right DoctorFinding the right doctor can be challenging for anyone, but it seems especially challenging for those of us in the rare disease...reactions2comments
Rare Diseases and Comorbidities: Which One Is Causing My Symptoms?!Living with a rare disease can come with a variety of comorbidities. It is difficult to know what to expect in terms...reactionscomments
