Amyotrophic Lateral Sclerosis
A Resilient Spirit: The Life of a Patient and Advocate
Jean’s life story is one of extraordinary resilience, a testament to the strength of the human spirit in the face of rare and challenging medical
The Value of Genetic Counselors: Why Their Role is Essential in Healthcare
- December 6, 2024
New Podcast Episode: The Role of AI in Medicine feat. Joe Lennerz, BostonGene
It Took Almost 60 Years for the Correct Diagnosis and Treatment for Primary Immunodeficiency
Reducing the Itch: Life with Progressive Familial Intrahepatic Cholestasis (PFIC)
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THE LATEST FROM PATIENT WORTHY
Alzheimer's disease
Alzheimer’s: Researchers at Japan’s Riken Center Discover a New Treatment to Alleviate Symptoms and Improve Memory
The Riken Center team, headed by Dr. Takaomi Saido and using mice with Alzheimer’s, discovered that dopamine may lessen the brain’s physical symptoms and improve
Myelomeningocele
Meet Liam, Living with Myelomeningocele
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
Amyloidosis
‘Anyone with a Heart’ Campaign Spreads Awareness About Hereditary ATTR Amyloidosis
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
Primary Biliary Cholangitis
New Drug Approved in the EU to Treat Primary Biliary Cholangitis
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
Hidradenitis suppurativa
Watch: Crystal’s Journey With Hidradenitis Suppurativa
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
Thyroid eye disease
Prevent Blindness: Nov. 18-24 is Thyroid Eye Disease Awareness Week
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
Pompe Disease
My Story with Pompe Disease
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
Spina Bifida
Mohammed’s Journey with Spina Bifida
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.
Hereditary Angiodema
Investigational Therapy Earns Orphan Drug Designation for Hereditary Angioedema
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
Metabolic dysfunction-associated steatohepatitis
An Unexpected Liver Transplant – Part One
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”
GRIN disorder
A Kingdom Rebuilt: Advocacy and Hope After the Loss of My Son to GRIN Disorder (GRIN1)
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
Dermatomyositis
Report Highlights Deficiencies in Dermatomyositis Care
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
Pompe Disease
The Importance of Staying Active with Pompe Disease
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
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