Participating in a Focus Group as a Rare Disease PatientRecently, the Cystic Fibrosis (CF) Foundation invited me to participate in a focus group with other late-diagnosed CFers. It was a fascinating...reactionscomments
Creating Business Cards for Rare Disease AdvocacyThink 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...reactionscomments
Reflecting on My 20th Anniversary With My Rare DiseaseMy life was upended because of a viral infection 20 years ago. In the fall of 2003, I was working in a...reactionscomments
How Nature Therapy Helps Me Live Better With a Rare DiseaseAccess to lush, green natural spaces feels like a privilege to me. As a person living with a rare disease, narcolepsy, it...reactionscomments
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...reactionscomments
What to Expect During a Disability Hearing (In America)My phone buzzed angrily. It was 20 minutes after the hour, and I’d been scrambling about frantically. I was searching for documents...reactions3comments
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
"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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
My Prurigo Nodularis StoryI was diagnosed with the above disease last year. It has a prevalence of around 3/10,000. The aetiology is unknown. It causes...reactions3comments
When There’s a Shortage of the Medicine That Keeps You AliveI need 2 medications to survive. I don't mean it in the sense that my health would deteriorate faster. And I don't...reactionscomments
Hygiene and Chronic Illness: 5 Tips for "Lazy" PeopleEditor's Note: This article was written by Mikayla Bianchin, a Health Leader living with cystic fibrosis. Read more of Mikalaya's articles at...reactionscomments
Medical Mystery Turned Into a Rare Disease WarriorJosiah J is a wild spirited two-year-old who has familial cold autoinflammatory syndrome (FCAS). When I was pregnant with Josiah I developed...reactions3comments
Planning a Vacation With a Rare DiseaseSummer is here! Time to travel to new places, experience local cuisine, and have some fun in the sun! Okay, easier said...reactions2comments
How Exercise Kept Me Out of the Hospital Until I Was 26Editor’s Note: This article was written by Megan Barlow and originally appeared on our Cystic-Fibrosis.com community. I have always been active. Since...reactionscomments
Living With a Rare Kidney DiseaseMost rare kidney diseases last a long time. There is no cure, and they often do not go away on their own...reactionscomments
5 Practical Tips to Thrive After a Kidney TransplantNot long after receiving my kidney transplant, I remember sitting on my couch, majorly uncomfortable and in pain after making the slightest...reactionscomments
