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Rare Disease

Can We Fix This Broken Heart? – Part 3

Editor’s Note: Patient Worthy is proud to bring you part 3 of 5 in a series of excerpts written by Dana Langston. Part 3: The

Wet macular degeneration

Next-Generation Eye Treatment OLN324 Demonstrates Superior Performance in Major Clinical Trial

Ollin Biosciences has announced important clinical trial results showing that OLN324, an investigational eye treatment, outperforms an existing therapy in treating two serious retinal diseases

Narcolepsy

Alkermes Launches Phase 3 Program for Investigational Narcolepsy Therapy Alixorexton

As reported on Business Wire, Alkermes plc has initiated a global phase 3 clinical development program to evaluate alixorexton, an investigational oral therapy for people

Rare Disease

Can We Fix This Broken Heart? – Part 2

Editor’s Note: This is the second part in a series of excerpts written by Dana Langston. Chapter 4: The Internal Shift We are living in

Multiple Myeloma

A New Hope for Treatment-Resistant Multiple Myeloma: CellCentric Advances InoPd into Pivotal Clinical Testing

Multiple myeloma, a cancer of plasma cells in the bone marrow, has become an increasingly manageable disease over the past two decades, thanks to successive

HIV/AIDS

Gilead Ends Midstage HIV Study as FDA Clinical Hold Continues

As reported on FierceBioTech, Gilead Sciences has closed one of its midstage clinical studies evaluating an experimental HIV regimen, following ongoing safety concerns that prompted

Rare Disease

Can We Fix This Broken Heart? – Part 1

Editor’s Note: The following is the first part of excerpt written and submitted to us by Dana Langston. There is a specific kind of internal

Rare Disease

Draft Guidance from FDA Introduces Important Changes to Drug Development for Rare Diseases

On February 23, 2026, FDA issued a Draft Guidance document, called “Considerations for the use of the Plausible Mechanism Framework to Develop Individualized Therapies that Target Specific

Cervical Dystonia

How I Manage My Pain – Pain Series Part 3 of 3

This is Part 3 of three articles I wrote about pain. The first 2 are entitled: Part 1- The real impact of pain that people

Amyloidosis

Ron’s Fight Against Amyloidosis

My journey with cardiac amyloidosis started shortly after I retired as a firefighter/paramedic in spring 2018. I started with trigger fingers—one in 2018 and two

Cancer

A Promising Approach to Tumor Ablation: Histotripsy

While surgery has long been the standard for removing solid tumors, a revolutionary technique called histotripsy is offering an alternative, as reported on MedPage Today.

Adenoid Cystic Carcinoma

Remix Therapeutics Advances Breakthrough Cancer Therapy with FDA Fast Track Designation for REM-422

Remix Therapeutics has achieved a significant regulatory milestone with the U.S. Food and Drug Administration granting Fast Track designation to REM-422, a first-in-class small molecule

Erythropoietic Protoporphyria

The Sun Sucks, But You Do Not

My whole life growing up, there was this specific buzzing sound that would come alive on the sunniest of days. I’ve been told over the

Pulmonary Embolism

Rachel’s DVT and Pulmonary Embolism Experience

On 12/12/2025, I was admitted into the ER for a thrombectomy due to a bilateral pulmonary embolism. While I am overweight and sometimes eat like

Narcolepsy

Bridging Nutrition Science and Patient Care: ANA and Jazz Pharmaceuticals Launch Cardiovascular Health Initiative

The American Nutrition Association (ANA) has announced a collaborative initiative with Jazz Pharmaceuticals designed to advance evidence-based nutritional education for individuals living with narcolepsy and

Epidermolysis Bullosa

The Mentor She Wished She Had – How Elizabeth Became a Lifeline for EB Families

This patient story is sponsored by Chiesi Global Rare Diseases and is promoted through the Patient Worthy Collaborative Content program. We only publish content that

Rare Disease

How to Build a Lasting Legacy While Living with Chronic Illness

Patients living with chronic or rare diseases and the caregivers coordinating appointments, medications, and daily life often carry a quiet question alongside the medical work:

Dravet Syndrome

The Dravet Syndrome Foundation of Spain’s Annual Meeting 2026

The Dravet Syndrome Foundation of Spain hosted its 2026 Annual Family Meeting on March 20 at the Rafaela Ybarra School in Madrid, bringing together roughly 100