
Myth Buster: You Don’t Need a High Protein Diet
Editor’s Note: Patient Worthy is honored to share this article from our friend Julie Lanford, MPH, RD, CSO, LDN – a.k.a. The Cancer Dietitian. To

Editor’s Note: Patient Worthy is honored to share this article from our friend Julie Lanford, MPH, RD, CSO, LDN – a.k.a. The Cancer Dietitian. To

Editor’s Note: Patient Worthy is honored to share the following story from our friends at Elephants & Tea, originally written by Michelle Lawrence, a patient

As reported on SciTechDaily, a large research review suggests age-related losses in muscle mass, strength, and physical function may have a stronger association with dementia

Investigational once-monthly therapy significantly reduced proteinuria versus placebo at 37 weeks, according to interim findings from the phase 3 study. As reported on PharmaBiz, Roche

Editor’s Note: Patient Worthy is proud to share the following story from our friends at Elephants & Tea, originally written by Dillon Groover, a brain

Editor’s Note: Patient Worthy is honored to share this article from our friends at Rareative. To see the article in its original format, please click

As reported on PharmaBiz, the FDA has accepted AstraZeneca’s supplemental Biologics License Application for durvalumab plus neoadjuvant enfortumab vedotin in patients with muscle-invasive bladder cancer

As reported on ONC Live, early findings from the phase 1/2 RALLY-MF trial suggest selcodebart may improve hemoglobin levels and reduce dependence on red blood

Once concentrated largely in tropical and subtropical regions, dengue is posing an expanding public health challenge as climate conditions, urbanization and population movement increase the

Diabetic retinopathy affects approximately 30% of adults with diabetes and stands as one of the leading causes of vision loss among working-age individuals worldwide. The

In June 2024, I went to the emergency room because the “flu” I’d been diagnosed with a week earlier had turned into abdominal pain that

People who inherit a rare change in the EGFR gene may be much more likely to develop lung cancer. Their risk is about 25 times

Semaglutide 2.4 mg becomes Singapore’s first approved therapy for adults with noncirrhotic metabolic dysfunction-associated steatohepatitis and F2-F3 fibrosis. As reported on the Manila Times, Singapore’s

The Ebola Outbreak: DR Congo The Ebola outbreak in DR Congo was declared in May 2026. As reported by the BBC, it is now the

Patients in the United States wait an average of 34 to 50 days (roughly 1 to 1.5 months) for an initial neurology appointment, with wait

As reported on FiercePharma, Merck & Co.’s Welireg has secured an expanded FDA approval that moves the drug earlier in the treatment of advanced kidney

I thought I wanted a second baby. My son was an adult, and despite having an adorable Frenchie, I was ready to take steps to

15 years ago I released my first PKU project. I never imagined the day would come when I would need to assert my boundaries this
#advocacy #adrenal Danny's Dose-changing Emergency Medical Protocols for Rare Medical Needs EveryLife Foundation for Rare DiseasesAn exciting opportunity from our friends and partner, Danny's Dose!!
~Living with or supporting someone with a hashtag#RareDisease / hashtag#ChronicIllness?
~Angry with care and access issues?
~Work in hashtag#Healthcare & see changes that need made?
Join us for a 4-Part Advocacy Education Series where you will learn proven information and insights to starting or strengthening your advocacy journey. {Registration is required - lnkd.in/gXxtJe7B
Session 1 - Wed, Sept 23 -- Finding Purpose in Your Journey
Session 2 - Wed, Oct 21 -- Building Your Foundation
Session 3 - Wed, Nov 18 -- Becoming an Effective Advocate
Session 4 - Wed, Dec 16 -- Advocacy Fundamentals
{Noon Eastern / 11 Central Time / 10 Mountain / 9 Pacific}
Each session is 30 minutes + 30 minutes for Q-n-A & brainstorming your personal issues.
**Provided by funding from EveryLife Foundation for Rare Diseases!**
#ShapeTheFuture #ChampionChange #SaveLives #Educate
... See MoreSee Less

What an incredible Saturday at the Here for the Girls, Inc. 5K! 💗🎀**
There’s something so powerful about coming together as a community. Especially when that community is united by strength, hope, and the shared mission of supporting those affected by breast cancer.
We were honored to connect with so many incredible patients, hear their stories, and learn from their journeys. Every conversation was a reminder of why patient voices matter and why creating spaces where people feel seen, heard, and empowered is so important.
We’re proud to stand alongside the breast cancer community and help amplify the voices and experiences that inspire change. 💕
A huge THANK YOU to Here For The Girls, for putting on such an incredible event and giving us the opportunity to support such an amazing community.💗🎀🏃♀️
#HereForTheGirls #H4TG #BreastCancerAwarenessMonth #BreastCancerCommunity #PatientWorthy #PatientEmpowerment #BreastCancerSupport #5K #RunForTheHills
... See MoreSee Less


+
Living with myelofibrosis and anemia can look different from person to person. Treatment may focus on managing anemia, easing symptoms, reducing complications, and addressing the underlying disease. Understanding available treatment approaches can help patients and caregivers have more informed conversations with their healthcare team.
Click the link below to share your story with us today!
ow.ly/ST3r50ZTSZG
#myelofibrosis #anemia #raredisease #bloodcancer #PatientWorthy
... See MoreSee Less



© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
What best describes you when it comes to rare disease? (check all that apply)
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.