This is week three of this season of The Bachelor on ABC, and week three of a patient-related subject highlighted on the show (Colton's CF foundation, Caelynn's childhood encephalitis)-- so I'm…
A couple weeks ago, we wrote an article about the role of Colton's Cystic Fibrosis foundation in this season of The Bachelor. Since my terrible TV taste is now revealed…
Happy Thursday! We hope everyone's week is going well. Today, we're highlighting a contribution from a cystinosis patient on the necessity of third-party medical providers. We're also sharing a story…
Pliant Therapeutics, Inc., a biotechnology company specializing in developing and commercializing treatments for fibrotic diseases, announced on January 3, 2019 through PRNewswire, that it has initiated a Phase 1 first-in-human…
Happy Thursday! We hope everyone's new year is off to a good start. If you're in need of some inspiration, we're highlighting a story of a woman with CIDP accomplishing…
Yesterday marked the beginning of season 23 of The Bachelor on ABC-- a TV show that I am told I invest in to an embarrassing degree, and yet, somehow, feel…
Happy New Year! For our first Editor's Choice of 2019, we want to highlight four articles from the last couple weeks. First, we have the story of young man who…
As it turns out, I am obsessed with Scrubs. The TV show, not the song. When I was at my sickest to date, those TV episodes got me through a…
As much as there is so much to talk about regarding dating while battling a chronic illness, I want to focus for a moment on what my long-term boyfriend has…
When my family friend's new girlfriend came to meet us, she made the best impression with her positive attitude and general ease in interacting with a large (and probably overwhelming)…
Hope everyone's holiday season is off to a good start! As we gear up for Christmas and the New Year, we're bringing you four stories that stood out from this…
Happy Wednesday! With Hanukah wrapped up, and Christmas just around the corner, things are getting pretty crazy. Take a second to relax and check out these four stories. First, we…
Press releases earlier this year on biotech company, Synlogic, announced quite favorable results on both pre-clinical and clinical data on a unique application of synthetic biology for the rare disease, phenylketonuria (PKU). In just…
If you haven't heard of neurofibromatosis (NF), you’re in surprisingly good company. For most of her life, Rachel Mindrup, an artist, illustrator, and Resident Assistant Professor at Creighton University, who…
Happy Wednesday! As the new month begins, we want to spotlight four articles. First, we have an incredible story about a Cushing's syndrome survivor and advocate and her talented service…
My name is Julie Bell. I am someone living with CIDP, Believe or not, it’s changed my life. And today, I consider myself blessed—even despite having a rare and equally…
There’s an episode of “The Office” that begins when Michael Scott, the branch manager, arrives at work wearing a fake mustache, an attempt to disguise what he believes to be…
While most of us have trouble accepting our limitations, it can be especially hard for people whose limitations are due to a rare disease. In meeting with and corresponding with…
We are entering the Thanksgiving season. I’ve been taught all my life that it shouldn’t be only a season, but an attitude year around. But how? By telling Mom thank…
Some experiences are seen through rose-colored glasses while others are hazy or ambiguous. Many, we try desperately to remember while others we we wish we could forget. And a special…
This is part two of Morgan's story. Read the first half here. I was taken off of work and school for three months to monitor my condition. I had to drop…
Happy Friday! Winter is coming and so is FDA news! Take a moment to check out some recent FDA announcements. FDA Approves Triplet Immunotherapy Combination for Multiple Myeloma Big news…
This is part one of Morgan's journey with POTS. Check out the second half of her story here. Like most stories, mine begins with someone else’s. I was in sixth…
While I write about rare and neglected disorders all the time, very few people in my life actually know about my own experience. I have hypermobile Ehlers-Danlos syndrome (EDS), a…
My name is Jasmine Taylor and I am 12 years old. October is one of my favorite months (July is the other one- it’s my birthday month!)… Let me tell…
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