As reported of The Manila Times, Health Canada has granted priority review to Chiesi Global Rare Diseases’ new drug submission for FILSUVEZ® (birch triterpenes) topical
As reported on Fierce Biotech, Silence Therapeutics reported positive phase 2 findings for divesiran, an investigational small interfering RNA (siRNA) treatment for polycythemia vera (PV),
As reported on Drugs, Scholar Rock says the US Food and Drug Administration’s review of its biologics license application for apitegromab, an investigational treatment for
Last year, I came down with a severe autoimmune disorder. It came out of nowhere. And it was bad. I was hospitalized three times over
Editor’s Note: We are honored to share this story from our friends at CURE SYNGAP. To see this article in its original format, please click
It was 2013, I was 21 years old, studying abroad in Italy, living the semester every college student dreams about. Then I woke up one
New research presented by Teva Pharmaceuticals at Psych Congress Elevate 2026, and reported on PharmaBiz, adds to the growing body of evidence supporting the use
Living with dystonia, or any chronic condition, places the nervous system under continuous pressure and strain. When symptoms are unpredictable or uncomfortable, the brain learns to
New Treatment Strategy May Eliminate Need for Immediate Organ Removal As reported on Bioengineer, groundbreaking clinical investigation led by researchers at Mayo Clinic suggests that
Editor’s Note: The following recipe was written and shared with us by our friend Julie, the Cancer Dietitian. I cannot tell you how many people
New Research Reveals Protective Link Between Routine Immunizations and Uveitis Prevention A comprehensive analysis of patient health records reported on Medscape has uncovered a promising
Editor’s Note: The following patient story was submitted to us by Daniel S.—an animal lover, sports fan, and former IIH patient. When you think about
As reported on MedScape, gradually extending the interval between belimumab doses may allow carefully selected patients with systemic lupus erythematosus (SLE) in long-term remission to
As reported on PR Newswire, the US Food and Drug Administration has granted Breakthrough Therapy designation to Kowa’s investigational therapy K-808 (pemafibrate) for primary biliary
As reported on The ASCO Post, perioperative treatment with enfortumab vedotin-ejfv plus pembrolizumab resulted in superior event-free survival, overall survival, and pathologic response rates compared
As reported by the BBC, the Ebola outbreak in DR Congo was declared in May 2026 and is now the second worst on record with
Editor’s Note: The following article was originally written by Dr. Linda Bluestein. Linda Bluestein, MD, is a board-certified anesthesiologist and internationally recognized expert in hypermobility
As reported on Gizmodo, Samsung has announced that its Galaxy Ring will soon support an FDA-cleared sleep apnea risk detection feature, making it the first
We replay our mistakes, criticize our appearance, compare our journey to someone else’s, and forget to recognize how far we’ve come.
Give yourself the grace you so freely give to others. You don’t have to be perfect to be worthy of love, kindness, or acceptance. And you don’t have to earn the right to appreciate the person looking back at you in the mirror.
Be a little gentler with yourself today. You’re doing better than you think. 🤍
#SelfLove #SelfCompassion #PositiveSelfTalk #PatientWorthy
Rare disease patients don't just live through unanswered questions.
They help answer them.
Through their experiences, advocacy, and resilience, they are helping shape the future of research, treatment, and care for generations to come.
The future of medicine is being written by patients, too.
#raredisease #PatientVoice #advocacy #PatientWorthy #FutureOfMedicine
From our friends FIA - Foundation for Inherited Arrhythmias
Foundation for Inherited Arrhythmias (FIA) - formerly SADS
www.fiacardiac.org
FIA supports families, educates healthcare professionals, and advances research and care for people affected by inherited heart rhythm conditions.
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