10 Empowering Tips to Prepare Your Child Living With a Rare Disease for College...I 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 Mission...Our rare disease journey began with concerns that the pediatrician dismissed as normal quirks. My child was slow to reach milestones, but...reactions1comment
Life as the Primary Caregiver: Insights from a Rare Mom...In 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 Disease...When 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 Term...Living with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line...reactions12comments
Dwayne Wilson...Dwayne was previously a health leader on RareDisease.net. My name is Dwayne Wilson and I have Late on-set Pompe Disease. Pompe, it's...
Fertility Preservation for Rare Disease Warriors...In a time marked by heightened awareness and discord surrounding reproductive health, caregivers of children with rare diseases carry a unique burden...reactionscomments
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
How to Care for Someone With Congenital Adrenal Hyperplasia...Caring for someone with congenital adrenal hyperplasia (CAH) is difficult. A CAH diagnosis can feel overwhelming since it is a lifelong genetic...reactionscomments
Jake Marrazzo...Jake Marrazzo is a writer, author, and patient advocate living with Duchenne muscular dystrophy. He was diagnosed at 8-years-old, and was in...
When Living With a Rare Disease Negatively Affects Sex Life...Sigh… 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 Connect...Living 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 Break...Since 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 Disease...How 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 Disease...My 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 Pause...The day my precious daughter was diagnosed with a rare disease is recorded in my heart, forever reminding me of a story...reactions3comments
Understanding Congenital Adrenal Hyperplasia...Congenital adrenal hyperplasia (CAH) is a group of rare genetic disorders that affect the adrenal glands. The adrenal glands are 2 walnut-sized...reactionscomments
Tips for Finding the Right Doctor...Finding the right doctor can be challenging for anyone, but it seems especially challenging for those of us in the rare disease...reactionscomments
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
