Patient Worthy

Nonalcoholic fatty liver disease

Good early progress but more docs need to engage, patients need to ask about Rezdiffra – Fatty Liver Foundation

PW Collaborator - January 16, 2025

Alzheimer's diseaseRare DiseaseTraumatic Brain Injury

Study shows sports-related brain injuries linked to long-term neurodegenerative diseases

Rare Disease

Expanded Access: What Patients and Caregivers Need to Know

Dystonia

There is no cure: The worst words to hear and believe

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Metabolic dysfunction-associated steatohepatitis

An Unexpected Liver Transplant – Part Three

Part 3 – Our Post-Transplant Journey (the first year) Continued from Part 2 From the nurses and doctors to the therapists and social workers and

Rare Disease

Study: Improved Well Being for Mothers of Disabled Children Who Forgive Gratuitous Criticism

The CDC reports that approximately 17% of parents in the U.S. have a disabled child. These parents not only cope with the stress that accompanies

Myasthenia Gravis

The Top 5 Ways to Stay Out of the Hospital During the Holidays

The holidays are a time of fun, family, and for many of us, a time when our chronic health conditions tend to flare up. We

Dystonia

Holidays with a Chronic Illness

Thinking about the year-end holidays brings up a kaleidoscope of images, and an array of emotions for me. And everyone else too, I imagine. There

Cerebral Palsy

For People with Gastroparesis, Holidays Can Be Painful

By Rachel Whetstone Food is fundamentally linked with celebrations in every culture around the world. Families gather for a feast at big holidays and birthdays

Dystonia

Holidays with Dystonia

What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since

Dysautonomia

How to Get Through the Holidays When You’re Depressed

For those of us who suffer from depression, that mostly invisible mental illness that, at its worst, can render us incapable of getting out of

Rare Disease

What’s the One Genetic Test I Would Recommend to Most People?

This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome

Adrenoleukodystrophy

Gene Therapy Promising for Cerebral Adrenoleukodystrophy but Carries Risk of Blood Cancer

The use of the gene therapy elivaldogene autotemcel (Skysona), has been approved due to its success in the treatment of patients diagnosed with the neurological

COVID-19

Disabled Journalists Have to Fight to Get into Newsrooms

In a recent article by Bailey Martens, she describes the struggles she and others have faced being disabled as journalists and brings light to the

Chronic Kidney Disease

The Newest Medications to Treat Chronic Kidney Disease in Type Two Diabetes

According to a recent report in Healio News, the GLP-1 agonists are medications developed primarily to control blood sugar levels for type two diabetes. About