Disability Benefits...When you have a chronic medical condition, there may be times when you are not able to work. This can seriously affect...
Workplace Considerations...Everyone deserves to be treated fairly at work, including people with chronic medical conditions or disabilities. It is not only the right...
Resources for Veterans, LGBTQ+ People, and Other Special Groups...Coping with a chronic health condition can be challenging for you, your family, and your caregivers. You rely on your healthcare team...
Managing Healthcare Expenses...Managing a chronic health condition can take a financial toll on you and your family. Costs add up quickly from medicines, testing...
Health Resources...Living with a chronic health condition can be challenging, frustrating, and tiring. You might feel like your life is on hold. Frequent...
Navigating Overnight School Trips When Your Child Has a Rare Disease...As a parent of a child with 2 chronic conditions, preparing my daughter for an overnight school field trip without me was...reactions2comments
Early Intervention Gave Me Hope...When 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 Grace...I 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 Her...15 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 Efforts...As 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 Answers...I 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 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
