My Rare Disease Holiday Survival Guide...Living with a rare disease like narcolepsy means that I have to live my life around my symptoms. Unfortunately, we don't get the holidays off from our rare diseases! Living...reactions3comments
Creating Business Cards for Rare Disease Advocacy...Think back to any time you shared about your rare disease with someone. Perhaps it was with a stranger, and it was just in passing. Perhaps it was with a technician completing a medical test for you...reactionscomments
Into the Unknown With My Rare Disease...I had a dream (or was it a nightmare?) last night about my disease symptoms increasing rapidly. I woke up blurry-eyed, slightly bemused that this had entered my dreamscape and...reactionscomments
3 Ways You Can Help a Rare Disease Caregiver...I am not going to lie and say that being a rare disease parent is easy. It is often a challenge for me to get through the day. I feel...reactionscomments
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....reactions6repliesCaregiving
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 bleeding into the joint, I have very little...reactionscomments
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...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 feels to receive the news of a child's...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 where one lives, the cost of medical testing...reactions1comment
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...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 isn't always easy to safely access the outdoors...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 make my friends laugh. For instance, I recently...reactionscomments
Active 7 days agoGrad 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....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 PubMed, and said that another family had set...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 symptoms, fatigue, never-ending appointments with specialists, continuously adjusting...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 tumor. He was only 22 years old. It...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 not know your story. But it is valuable...reactionscomments
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...reactionscomments
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...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 the world. The first message boards, also known...reactionscomments
