Navigating Life with a Rare Disease: An Accessibility Story...The most consistently bothersome aspect of living with hemophilia is my left ankle. Due to both minor and, on rare occasions, major...reactions3comments
Reflecting on My 20th Anniversary With My Rare Disease...My life was upended because of a viral infection 20 years ago. In the fall of 2003, I was working in a...reactionscomments
From One Caregiver to Another: What I Learned After My Child's Diagnosis..."You are not alone." These are the 4 most common words I choose to tell another caregiver. I know how heavy it...reactionscomments
Lessons Learned in Navigating Medical Debt...With any medical event, but especially when it's a chronic illness or rare disease, medical debt can easily build up. Depending on...reactions6comments
Caring for Hudson: Q&A With a Parent Managing Hypotonic Cerebral Palsy...The best thing that has come out of being part of the rare disease community is the passionate, loving, and optimistic people...reactionscomments
How Nature Therapy Helps Me Live Better With a Rare Disease...Access to lush, green natural spaces feels like a privilege to me. As a person living with a rare disease, narcolepsy, it...reactionscomments
How I Get Through Tough Days...Humor plays a huge role in my life. I'm pretty open about having hemophilia A, and I rarely miss an opportunity to...reactionscomments
Grad School ...Any tips for managing grad school with rare disease? I suffer from neuromuscular disease and it affects basically every part of my...reactions5replies
Being the Change: How My Advocacy Started...I remember the day the genetic counselor called me with my son's diagnosis. She gave me information about a paper published on...reactionscomments
4 Tips for Communicating With Loved Ones...It can be so hard for people outside of the rare disease community to truly understand what we go through – ongoing...reactionscomments
Living for the Moment: Doing the Unexpected With Pompe Disease...It was 2018, and I turned 50 years old in March. The following month, we lost our oldest son to a brain...reactionscomments
Community Views: The Biggest Misconception About My Rare Disease...Having a rare disease poses problems many people can not imagine. It can be discouraging to share your experiences when others do...reactionscomments
A Guide to Awareness Proclamations: What Are They and Why Do They Matter?...Let’s talk about awareness proclamations. It’s likely fair to say that most of us have seen an awareness proclamation announcement by a...reactionscomments
Finding Joy While Raising a Child With a Rare Disease...It's hard to remember what my life was like before having a child with a rare disease. I became the caregiver of...reactions2comments
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
Rare Disease and Food Insecurity ...Have you ever been so affected by your rare disease that you weren't able to go grocery shopping, leaving your pantry empty...reactionscomments
Inspirational, Courageous Me?!...Someone told me today that I was an inspiration. It's not the first time. In 2010, when I had the immense luck...reactionscomments
No Family Is the Same: A Caregiving Parent Perspective on Divorce...As a young child, I was surrounded by the most amazing family. There were family gatherings, family vacations, and memories. And then...reactionscomments
Inclusivity and Rare Diseases: 6 Things for Friends and Family to Consider...Social situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not...reactions1comment
"What's Up, Doc?" What the Doctor-Patient Relationship Means to Me...Your relationship with your doctor can have a big impact on your health. Since your doctor is a key member of your...reactionscomments
