A first-of-its-kind Phase 3b study has shown that combining Eli Lilly’s Taltz (ixekizumab) with Zepbound (tirzepatide) delivers superior benefits for adults living with both active
As reported by Bioengineer, new insights published by Nastoupil L.J. in Nature Reviews Clinical Oncology (2026) highlight an important evolution in the management of relapsed
Editor’s Note: Patient Worthy is honored to share this article from our friends at Heal Canada, written by Karen Hawthorne. Anemia is one of the
A new study in Nature Communications and reported by Scienmag.com overturns a central assumption in eye biology by showing that key stem cells for the
In a recent statement by AstraZeneca, AstraZeneca and Daiichi Sankyo’s antibody‑drug conjugate Datroway (datopotamab deruxtecan) has been granted Priority Review by the U.S. Food and
Editor’s Note: Patient Worthy is pleased to share part 5 of 10 in an ongoing series of blog posts, provided to us by Elena Genik.
A trio of Swiss biotechnology companies is advancing diverse therapeutic pipelines, with recent developments spanning inflammatory skin disease, immune‑mediated hair loss, and hard‑to‑treat cancers. Together,
As reported on BioSpace, Moderna has entered a commercialization agreement with Recordati valued at up to $160 million to support late‑stage development and future market
Scientists find polymer-coated nanoparticles together with therapeutic drugs offer promise for cancer treatment, including treatment for ovarian cancer. According to Science Daily, these nanoparticles may
A UCLA Health study published on UCLAHealth.org suggests that numbers already used to gauge heart health may also offer an early warning for serious eye
As reported on ScienceDaily, a research team at the Icahn School of Medicine at Mount Sinai has unveiled a novel immunotherapy that tackles metastatic cancer
Editor’s Note: We’re honored to share part 4 of 10 of an ongoing blog series, originally written by Elena Genik. When You Go to a
As reported on drugs.com, REGENXBIO has disclosed that the U.S. Food and Drug Administration has halted clinical testing of its investigational gene therapies RGX‑111 and
Editor’s Note: Patient Worthy is honored to share this patient story, provided to us by our friends at Heal Canada, and originally written for the
Roche has announced encouraging results from its Phase II trial of CT-388, an experimental obesity treatment that achieved placebo-adjusted weight loss of 22.5% over 48
The European Medicines Agency (EMA) has issued a positive opinion recommending that retifanlimab (Zynyz) be approved for an expanded indication to treat adults with advanced
Editor’s Note: Patient Worthy is honored to share part 3 in an ongoing 10-part series, written and shared with us by Elena Genik. When My
Researchers have developed an innovative deep learning model capable of accurately differentiating thyroid eye disease (TED) from orbital myositis using computed tomography (CT) imaging, potentially
Living with myositis? You have options. Modern treatment combines medication, rehabilitation, and self-care to manage symptoms and improve quality of life. #myositis #myositisawareness #PatientWorthy #shareyourstory with us here: bit.ly/4dV7gru
During Rare Disease Month, Patient Worthy is honored to share Jen's journey!
"Hi, I’m Jen. I’m 38—a homeschooling momma, wife, writer, and photographer. I live with Hypermobile Ehlers-Danlos Syndrome, POTS, Mast Cell Activation Syndrome, Small Fiber Neuropathy, multiple autoimmune conditions, and several vascular compression syndromes. After years of misdiagnosis, I finally received the correct diagnoses at age 33. Living with a rare disease isn’t easy. There isn’t always treatment. Many of us end up knowing more about our conditions than our doctors. Most people have never heard of our diseases, and our community can feel small. But raising awareness gives patients like me a voice. Doctors are taught, “When you hear hoofbeats, think horses—not zebras.” But some of us are zebras.
Just because we’re rare doesn’t mean we’re not out there." 🦓💜
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy
"Hi, my name is Dwayne. Although I wasn’t diagnosed with late-onset Pompe disease until I was 50 years old, it’s always been a part of my life. It’s in my DNA.
When I found out that Pompe disease is a rare disease, the month of February became so much more meaningful to me. I wanted to share the story about my journey with others. I want others to know that they’re not in this battle alone. If my story can encourage someone else on their path, then it’s a blessing.
On Feb. 28, the world celebrates Rare Disease Day. It’s a day when people and families living with rare diseases share their stories and bring awareness to their community. It’s about being part of the rare disease community and showing support for one another. It’s a time for companies and organizations to use their platforms on social media to spread awareness about rare diseases. It’s a day and month when the entire world comes together to raise that awareness.
Rare disease patients are not the horses sitting quietly in the stable. We’re the zebras marching to the hoofbeats of our unique abilities and qualities, the ones that make us rare. We never give up. We stand out in a crowd and make the loudest noise.
Having Pompe disease makes me a zebra. I’m not an ostrich sticking my head in the sand. I have a voice and a story that deserves to be heard. It’s one that I can share with others to help them on their journeys. Rare disease awareness matters to me to make a difference in the world.
On Rare Disease Day, people are encouraged to “show your stripes,” to wear the colors of rare diseases. Post your photos on social media and tag your loved ones, friends, and colleagues to show your support for rare disease patients. I encourage all my friends, family, and readers to share your zebra photos on social media, with the hashtags #showyourstripes. You can even tag me — smashingpompe — to show that you Care for Rare!"
Rare Disease Month may be coming to an end, but here at Patient Worthy, we lift up patient and caregiver voices 365 days a year! Share your story with us: bit.ly/4dV7gru
#RareDiseaseWeek #WeAreRare #PompeDisease #PatientWorthy
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