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
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
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
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...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
How My Therapist's Questions Help Me Manage Medical Trauma...As a person with a history of medical trauma related to my rare diseases, sometimes I put expectations on myself that are...reactions7comments
Embracing Mindfulness: 31 Affirmations for Rare Disease Caregivers...Reflecting on the past year, I realize that last year was a test of self-discovery, leading me down a path I never...reactionscomments
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
Caring for a Child With a Rare Disease: Vacations? What Are They?...As parents, we cherish the moments when we can create lasting memories with our children, especially during vacations. However, for those of...reactions1comment
FDA Approves Gene Therapy: A Rare Disease Parent Advocate Reflects on Hope and Challenges Ahead...Today, 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 Me...I’m often asked, “How did you come to terms with how your rare disease changed your life?” or “How did you mourn...reactionscomments
