Caring for a child with a rare disease...This forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....Reactions0reactionsComments6 repliesCaregiving
Don’t Pass on the Pass: An Accessibility Fail...The most consistently bothersome aspect of living with hemophilia is my left ankle. Due to both minor and, on rare occasions, major bleeding into the joint, I have very little... By Shawn Decker3 min readBookmark for laterReactions0reactionsComments0 comments
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 children's hospital, and I had many contracts in... By Annie-Danielle Grenier4 min readBookmark for laterReactions0reactionsComments0 comments
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 feels to receive the news of a child's... By Elle Cole5 min readBookmark for laterReactions0reactionsComments0 comments
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 where one lives, the cost of medical testing... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments1 comments
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 I have met. The ones that, even on... By Alex Gaudlap5 min readBookmark for laterReactions0reactionsComments0 comments
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 isn't always easy to safely access the outdoors... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments0 comments
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 make my friends laugh. For instance, I recently... By Shawn Decker3 min readBookmark for laterReactions0reactionsComments0 comments
Grad School ...Any tips for managing grad school with rare disease? I suffer from neuromuscular disease and it affects basically every part of my body. I will be studying data analysis....Reactions0reactionsComments4 replies
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 PubMed, and said that another family had set... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments0 comments
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 symptoms, fatigue, never-ending appointments with specialists, continuously adjusting... By Jessica Hanson2 min readBookmark for laterReactions0reactionsComments0 comments
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 tumor. He was only 22 years old. It... By Dwayne Wilson4 min readBookmark for laterReactions0reactionsComments0 comments
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 not know your story. But it is valuable... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
A Guide to Awareness Proclamations: What Are They and Why Do They Matter?...Let’s talk awareness proclamations. It’s likely fair to say that most of us have seen an awareness proclamation announcement by a city, state, or even country for something. Awareness proclamations... By Jenny Jones4 min readBookmark for laterReactions0reactionsComments0 comments
Finding Joy in the Rare Life...It is hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still... By Alex Gaudlap2 min readBookmark for laterReactions0reactionsComments2 comments
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 the world. The first message boards, also known... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
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 for days or weeks at a time with... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments0 comments
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 to be selected to go and work with... By Annie-Danielle Grenier3 min readBookmark for laterReactions0reactionsComments0 comments
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, one day, nothing was the same. I found... By Alex Gaudlap4 min readBookmark for laterReactions0reactionsComments0 comments
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 quite getting it, it can certainly feel exhausting... By Jessica Hanson2 min readBookmark for laterReactions0reactionsComments0 comments