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Acromegaly

PATIENT INPUT NEEDED: Pituitary Adenoma vs. PitNET Nomenclature Change

Editor’s Note: This article is brought to you by our friends at the Acromegaly Community, and shared with our audience at their request. To learn

Dystonia

The Power of Our Inner Dialogue on Our Health

Editor’s Note: This article by Tom Seaman was originally shared by Patient Worthy on 12/15/22. I believe very strongly in the power of thoughts and

Rare Disease

Puberty Blocker Trial Aimed at Reducing Harm Amid Ongoing Debate in Youth Gender Care

A recent BBC report highlighted a forthcoming clinical trial examining puberty-suppressing medications in young people is being positioned by its proponents as a necessary step

Myelofibrosis

Lilly’s Type II JAK2 Inhibitor Shows Early Promise in Myelofibrosis

As reported on MedCity News, Eli Lilly has reported encouraging early-stage clinical data for AJ1-11095, an investigational therapy for myelofibrosis acquired through its recent purchase

Hypertrophic Cardiomyopathy

Les’ Journey with Cardiomyopathy

My name is Les Howard, and I am living with hypertrophic obstructive cardiomyopathy (HCM). Looking back, I believe I may have lived with HCM for most

Myelofibrosis

Sumitomo Pharma America Highlights Early Myelofibrosis and Leukemia Findings at EHA 2026

As reported on PharmaBiz, Sumitomo Pharma America (SMPA) presented new clinical and translational data spanning myelofibrosis (MF) and acute leukemia programs at the 2026 European

Colorectal cancer

A Colonoscopy Remains the Gold Standard to Detect Colorectal Cancer

In the United States, colorectal cancer represents the third most frequently diagnosed malignancy and the second leading cause of cancer-related death. A colonoscopy continues to

Fibrinogen deficiency

Grifols Launches New Bleeding Disorder Treatment, FESILTY™, in the U.S.

Grifols, as announced in a recent press release, has officially launched FESILTY™ (fibrinogen, human-chmt) in the United States. The therapy is approved to treat sudden,

Diabetes Type 1

First Disease-Modifying Therapy to Delay Type 1 Diabetes Now Available Through NHS

As reported by the BBC, landmark advance in type 1 diabetes care has been reached with the introduction of teplizumab, the first treatment shown to

Ebola

An Update on the Ebola Outbreak

Further to the WHO’s official confirmation of an outbreak of 300 Ebola cases as of May 2026, health authorities in the Democratic Republic of the

Rare Disease

Breathing Easier: A New Weapon in the Battle Against Deadly Lung Molds

Every single day, the average person inhales thousands of microscopic fungal spores. For most of us, our immune systems destroy these tiny invaders before they

Alzheimer's disease

Possible Mechanism Linking Amyloid and Tau Offers New Direction for Alzheimer’s Therapy

As reported on Scientific American, a growing body of research suggests that Alzheimer’s disease progression is driven by a complex interplay between beta-amyloid plaques and

Charcot-Marie-Tooth disease

Where in the World is Jenny Decker?

Editor’s Note: This story is a continuation of Jenny Decker’s global sailing voyage. To see the original article, please click here. Jenny Decker left Hawaii in

Rare Disease

Diagnosing the Undiagnosed in Rare Disease: Worldwide, Multi-Institution, and Multi-disciplinary Work Underway

Recently at the World Orphan Drug Conference in Boston, Patient Worthy had the opportunity to meet with Dave Pearce PhD, Chair of International Rare Disease

Renal Cell Carcinoma

Opdivo–Cabometyx Combination Shows Significant Survival Benefit in Advanced Kidney Cancer

As reported on Yahoo News, a combination therapy involving nivolumab (Opdivo) from Bristol Myers Squibb and cabozantinib (Cabometyx) from Exelixis has demonstrated substantial clinical benefit

Microcephaly

Supporting Siblings Through Loss: Remembering My Sister Heidi

Editor’s Note: This article was shared with us by our friends at the Courageous Parents Network. To see the article in its original format, please

Fragile X Syndrome

Biotech Firm Begins Phase IIa Trial for New Fragile X Therapy

In a recent statement, CONNECTA Therapeutics, a biotechnology company focused on disorders of the central nervous system, has announced the start of its Phase IIa

COVID-19

A Cumulative COVID-19 Report for April/May 2026

As seen in the CDC’s recent reports, 0.6 per 100,000 people were hospitalized in mid-April with confirmed hospital admissions averaging between 800 to 900 in