Pacing Yourself, Pushing Yourself: Managing Energy With a Rare Disease...I am beginning this article on my commute train to work, starting another work week after a typical weekend for me of...reactionscomments
How Persistence and Medical Partnership Impacts Diagnosis...I am a complicated rare disease patient. Not only do I have 2 rare diseases and am potentially developing a third, but...reactionscomments
Landing the Right Advocacy Opportunity...Editor's Note: This article was written by Wunmi Bakare, a Health Leader living with sickle cell disease. Read more of Wunmi's articles...reactionscomments
Journey to Chronic Rare Disease Treatment...Living with a rare disease is difficult. Getting access to treatment for rare diseases can be inaccessible for many. Many rare disease...reactionscomments
4 Realities of Living With Advanced Symptoms of a Rare Disease...As someone living with advanced lung disease due to a rare disease called cystic fibrosis, I am all too familiar with the...reactionscomments
My disease ...I have pulmonary fibrosis. I was diagnosed in 2001.. and told I would be dead 'by this time next week '!! I...reactions2replies
Rare Disease Advocacy Is a Constant, Never-ending Opportunity...Recently, I was reminded, in the most unexpected way, that advocacy doesn't take a break even when it's the furthest thing from...reactionscomments
What does advocacy mean to you?...Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are...reactions3repliesAwareness
Red rash in my mounth...I have red "rash" or something in her mounth for more then 2 months. What do you think this is?...reactions2replies
Community Views: We Are Rare, But Not Alone...Rare diseases can change your life with the everyday challenges it brings. It is hard enough to live with the constant stress...reactionscomments
5 Changes I Would Like to See in the U.S. Healthcare System...As someone who has been to many, many doctors for multiple chronic illnesses and a rare disease, there are so many things...reactions4comments
Alex Gaudlap...Alex Gaudlap is based in New Jersey, right outside of Philadelphia. Alex is one of the many people that did not plan...
What If I Hadn't Been Born With a Rare Disease?...There's a Marvel Comics series called "What If...?" It offers mind-bending scenarios about what could have happened if one little thing was...reactionscomments
Why I Am Scared to Own a Handicap Parking Sticker...Editor's Note: This article was written by Janeil Whitworth, a Health Leader living with cystic fibrosis. Read more of Janeil's articles at...reactions8comments
Invisible Illness...What aspects of your rare disease are invisible to others?...reactions81repliesCoping
Medical Mystery Turned Into a Rare Disease Warrior...Josiah J is a wild spirited two-year-old who has familial cold autoinflammatory syndrome (FCAS). When I was pregnant with Josiah I developed...reactions3comments
3 Ways I Combat Burnout...As a person living with a rare and chronic disease, I have much less energy than the average person. Even keeping up...reactionscomments
Planning a Vacation With a Rare Disease...Summer is here! Time to travel to new places, experience local cuisine, and have some fun in the sun! Okay, easier said...reactions2comments
Traveling With a Rare Disease...Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to...reactions20repliesTravel
Rare Disease in Children...Were you diagnosed in childhood? How did having a rare disease shape you? If you are a caregiver, share about your little...reactions2replies
