How I Get Through Tough DaysHumor 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 laterReactions 0 reactions Comments0 comments
Being the Change: How My Advocacy StartedI 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 laterReactions 0 reactions Comments0 comments
4 Tips for Communicating With Loved OnesIt 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 laterReactions 0 reactions Comments0 comments
Living for the Moment: Doing the Unexpected With Pompe DiseaseIt 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 laterReactions 0 reactions Comments0 comments
Community Views: The Biggest Misconception About My Rare DiseaseHaving 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 laterReactions 0 reactions Comments0 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 laterReactions 0 reactions Comments0 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 laterReactions 0 reactions Comments0 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 laterReactions 0 reactions Comments0 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 laterReactions 0 reactions Comments0 comments
No Family Is the Same: A Caregiving Parent Perspective on DivorceAs 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 laterReactions 0 reactions Comments0 comments
Inclusivity and Rare Diseases: 6 Things for Friends and Family to ConsiderSocial 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 laterReactions 0 reactions Comments0 comments
"What's Up, Doc?" What the Doctor-Patient Relationship Means to MeYour relationship with your doctor can have a big impact on your health. Since your doctor is a key member of your healthcare team, they should be someone you are... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
I’ve Learned Self-care. What About Self-love?When we experience chronic illness, particularly a rare disease, I believe it's common for us to have trouble not just providing ourselves with self-care but also self-love. We can easily... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Building a Rare Disease Treatment Plan Brick-by-BrickIt can take years to build an effective treatment plan to treat a rare disease like narcolepsy. I know this from my own personal experiences of living with narcolepsy, as... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
When a Rare Disease Diagnosis Brings Clarity (And New Concerns)At age 65, I was diagnosed with cystic fibrosis (CF) by National Jewish Health (NJH) in Denver 6 months after I took myself there for a MAC lung disease evaluation... By Gina Miller4 min readBookmark for laterReactions 0 reactions Comments2 comments
Some of My Most Absurd Rare Disease MishapsAlthough hilarity is not often associated with a rare disease, I'm glad I can laugh off a lot of the indignities that can come with mine. Having just turned 48... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
Pacing Yourself, Pushing Yourself: Managing Energy With a Rare DiseaseI am beginning this article on my commute train to work, starting another work week after a typical weekend for me of rest and activities. Like many people with rare... By Natalie Abbott2 min readBookmark for laterReactions 0 reactions Comments0 comments
How Persistence and Medical Partnership Impacts DiagnosisI am a complicated rare disease patient. Not only do I have 2 rare diseases and am potentially developing a third, but whenever I have a new medical condition, it... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Landing the Right Advocacy OpportunityEditor's Note: This article was written by Wunmi Bakare, a Health Leader living with sickle cell disease. Read more of Wunmi's articles at Sickle-Cell.net. Through my work in advocacy, an... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Journey to Chronic Rare Disease TreatmentLiving with a rare disease is difficult. Getting access to treatment for rare diseases can make treatment inaccessible for many. Many rare disease medications are expensive and subject to price... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments