Meet Liam, a 12-year-old patient at Shriners Children’s St. Louis, born with myelomeningocele, a severe form of spina bifida. This condition affects sensation in his legs, leaving him without feeling…
Fredericksburg, Virginia resident Johnny Boatman is a former national guardsman who had been in excellent physical condition all his life. That was until 2022 when he felt a sharp pain…
It has been almost a decade since the European medical community welcomed news of an innovation for primary biliary cholangitis (PBC). Therefore, the EC’s recent conditional approval of Ipsen’s drug…
Crystal first started noticing abscesses on her skin around age 11, and was officially diagnosed with Hidradenitis Suppurativa (HS) at age 13. HS is a chronic, inflammatory skin condition that…
According to an announcement from invisionmag.com, the nonprofit organization Prevent Blindness has announced the fifth annual Thyroid Eye Disease Awareness Week, which is being recognized from Nov. 18-24, 2024. Thyroid…
Written by Heather Shorten, Founder, Pompe Alliance On July 15th, 2015, I was diagnosed with Pompe disease after about 3 years of searching for a diagnosis. I know 3 years…
Mohammed was born with spina bifida, a condition in which part of the spine doesn’t develop properly, exposing sections of the spinal cord and nerves. Born in Syria while his…
According to a story from Business Wire, the biopharmaceutical company Astria Therapeutics, Inc., recently announced that its experimental therapy navenibart has earned the US Food and Drug Administration's Orphan Drug…
Written by Bill Clark Part 1 - Our Journey from Fatty Liver to Liver Failure Becky's fight is our fight. That became my "rallying cry” early on when my wife…
Written by Lauren Williams On August 4, 2023, I contributed an article to Patient Worthy about how I transformed my mindset from “Why me?” to “Why not me?” following my…
An article in Globe Newswire described dermatomyositis (DM) as a rare disease that involves a unique skin rash and muscle weakness. Currently doctors are relying on traditional disease-modifying anti-rheumatic drugs…
Written by Vanessa O'Connell Hello, my name is Vanessa, and I am living with late onset Pompe disease, also known as glycogen storage disease type II and acid maltase deficiency.…
Patient Worthy collaborator Heal Canada has recently released the 5th edition of its digital magazine E³ Advocacy---Empower, Engage, Educate. This publication is dedicated to sharing articles, reflections, news, and resources…
According to a story from Healio, a recent study determined that adults living with Graves' disease who were being treated with antithyroid medications will have an elevated risk of developing…
Mia was diagnosed with Osteosarcoma in 2018 and was told she was incurable in 2022. Since her diagnosis, Mia has worked with MIB Agents and launched the osTEAo podcast alongside…
Written by Linda Shows Let me start with, I’m BLESSED even though I have Alzheimer’s disease (AD). I am a blessed wife, mother, daughter, sister, friend, dog mom, nurse and…
Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back with a new episode. This week, Colby is sitting down with Steve Smith, a…
Written by Chuck Howe Nothing in life gives me greater joy than seeing my grandchildren be happy and thrive. You can imagine the heartbreak and fear I experienced when I…
"Fate whispers to the warrior, 'You cannot withstand the storm.' The warrior whispers back, ‘I am the storm.” -Jake Remington This is Jaime Gibbons' favorite quote. While going through her…
In 2023 a 19-year-old male teenager was suffering from memory decline that first began when he was 17 years of age. His cognitive losses continued during the next few years.…
Written by Yla Flores Have you ever experienced a seemingly small moment that ended up changing your life forever? Whether it’s turning left instead of right, going out one night…
A protein called Aplp1 is now on the radar for its ability to spread material in the brain that may be responsible for Parkinson’s disease. Another protein, Lag3, interacts with…
According to a story from Healio, analysis of the FDA Adverse Events Reporting System database indicates that tirzepatide has a superior safety profile when compared to GLP-1 inhibitors that have…
HCU Network America is a nonprofit organization dedicated to supporting patients with homocystinuria (HCU) and finding a cure. This October, the group is organizing HCU Awareness Month. With the goal…
Colleen's remarkable journey with metastatic melanoma serves as a powerful testament to the resilience of the human spirit. Diagnosed in April 2016 with stage IV metastatic melanoma, her determination and…
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