Emerging Indie pop artist Betsa has recorded a song to raise awareness for an important cause – one that has been making national headlines in recent weeks. Her new release…
Happy Wednesday Everyone! We're excited for the spring weather coming up! Today, we're highlighting an article on some good news for the rare community in canada, followed by an update…
Happy Thursday! Today, we're highlighting an article on a story about rare disease discrimination, followed by news about a musician who went public with a rare diagnosis. After that, we…
The Dupuytren Research Group was founded ten years ago. Our original name was Dupuytren Foundation. Our original mission was simple: to advocate for Dupuytren patients. Providing patient education, physician education, connecting patients with patients,…
My name is Casey. I’m 27 years old and have a 50% chance of becoming symptomatic for a neurodegenerative disease in my 30’s (if my onset aligns with that of…
According to a story from Markets Insider, Taiho Oncology, Inc. recently announced that the US Food and Drug Administration (FDA) has officially approved the company's cancer drug LONSURF in the…
Patient Worthy has the distinct pleasure of attending the Sixth Annual Rare Disease Genomics Symposium at the University of Alabama at Birmingham (UAB) this weekend. Today, we heard from lead…
Happy Rare Disease Week! This week has been all about rare diseases. Today, we're highlighting an article from a PW contributor with FAP, followed by a story describing some shortcomings…
“There Is No Gene for the Human Spirit”—from the movie Gattaca, 1997 Whether it’s distant uncles purported to be horse thieves in the early days of the…
A traditional Dupuytren narrative is that Dupuytren is primarily a painless nuisance problem of bent fingers in old men. This perception does a disservice to many. Not only is Dupuytren common…
Happy Wednesday! Today, we're highlighting an article about gene therapy for MPS, followed by a story about a singer with Achalasia. After that, we have an article about app for…
Loukisha shares her journey with hereditary angioedma (HAE). Living with a rare disease you'll experience highs and lows. Unfortunately the moments of struggle are unavoidable; all you can do is…
Happy Valentine's Day! Whether you're looking forward to spending tomorrow with a partner, or with friends and family, we hope you're having a good week. Today, we're highlighting an about…
Full Patient Enrollment in Study Expected by Year-End 2019 LEXINGTON, Mass. and AMSTERDAM, The Netherlands, Feb. 04, 2019 -- uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing transformative therapies for…
We’ve all become a little more in tune to what’s good for our bodies, and what isn’t. Part of that is medical science finally being able to identify our bodily…
Hope everyone's week is going well! Today, we're highlighting an article discussing the difficulties of securing a CIDP diagnosis, followed by an update on a Niemann-Pick Type C treatment. Next,…
Progress Report Debuts ASCO’s Research Priorities for the Cancer Community, Emphasizes Impact of Federal Funding FOR IMMEDIATE RELEASE January 31, 2019 Ashley Yum 571-483-1376 [email protected] ALEXANDRIA, Va. — Over the…
Happy Wednesday! While it's felt like January was going to last forever, we're almost through the first month of 2019. As we gear up for February, we want to reflect…
Hope everyone is having a wonderful Wednesday! The weather where we are is freezing this week-- but that's a perfect excuse to sit down with a few of our top…
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…
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