Jason Hunter
Jason Hunter is the independent writer and editor behind Trial Friend. He writes and edits the News and Analysis articles, the disease and drug pages, and the rare disease FDA calendar. He has worked in the pharmaceutical industry and has a long-running curiosity about rare disease, biotech and how new drugs reach patients. He started the site after watching someone close to him live with a rare disease, and the About page tells that story.
What he does, and what he is not
His work is reading the documents patients rarely have time for, FDA approval notices and prescribing labels, ClinicalTrials.gov records, peer-reviewed papers and company regulatory filings, and turning them into plain language with the source named in the sentence. He is not a physician, pharmacist or researcher, and nothing he writes is medical advice. Treatment decisions belong with you and your care team.
How he uses AI
The thinking behind Trial Friend is his: what to cover, what patients need to know first, which sources count, how each page and tool should work, and the detail and judgment in between. AI tools help him stitch that work together and validate it, including research, drafting to his direction, and checking. Every fact has to trace back to an FDA document, a ClinicalTrials.gov record or a published study, never to an AI answer. Nothing is published automatically: each article is checked against the sources it cites and approved by him before it goes live, and errors readers report are corrected in the open. The details are in the editorial standards.
Independence
No pharmaceutical company, hospital or research institution reviews, approves or pays for anything he writes. If a conflict of interest ever arises with a company or drug the site covers, it will be disclosed in the post. The full rules are in the editorial standards.
Get in touch
He likes hearing from patients, caregivers, advocacy groups, researchers and clinicians. Story ideas, corrections and sources he missed are all welcome: email jason@trialfriend.com. For a correction, include the page and the issue. When a post changes in substance, its Updated date changes with it.
Articles by Jason Hunter
64 articles, newest first. New ones also arrive in the RSS feed.
- Atacicept vs Povetacicept for IgA Nephropathy Before the FDA Decision on November 30th
- A Third of Rare Disease Trials Can Shut You Out Over a Medication You Already Take
- Alpha-1 Antitrypsin Deficiency Treatment Has Meant a Weekly Infusion Since 1987, and a One-Time Gene Edit Is Now Testing That
- Your Insurer Denied a Rare Disease Drug and Fewer Than 1 in 100 People Appeal, So Here Is the Playbook
- ATTR Amyloidosis Treatment in 2026, 5 Approved Drugs Compared on Survival, Dosing and Side Effects
- Before You Pick a 2027 Medicare Plan, 8 Things to Check If You Take a Rare Disease Drug
- INO-3107 Could Become the Second Treatment for Recurrent Respiratory Papillomatosis on October 30th
- What Clinical Trials Are Available for Acromegaly? 17 Are Open, and 3 Have US Sites for Patients
- Lirafugratinib Is Approved as Lyrfigtu, the First FGFR2-Only Drug for Bile Duct Cancer
- Camzyos Could Become the First Drug Approved for Teenagers With Obstructive HCM on September 30th
- Aqneursa Is the First Approved Treatment for Ataxia-Telangiectasia, Nearly 8 Months After the Disease's Biggest Trial Failed
- Emcitate Is Approved for MCT8 Deficiency, and the Trials Show It Treats the Body but Not the Brain
- Isembyld Is Approved for SMA as the First Muscle-Targeted Add-On to Spinraza and Evrysdi
- UX111 Is Approved as Fayuvi, the First Treatment for Sanfilippo Syndrome, and the Label Says Exactly Who It Is For
- 6 Approved Drugs for IgA Nephropathy and What Their Labels Actually Promise
- Alpha-Gal Syndrome and Blood Transfusions, What Type O Patients Should Tell Their Hospital
- 1 Year of Palsonify and What Switching From Acromegaly Injections to a Pill Involves
- We Built a Free Alpha-Gal Medication Checker
- The FDA Approved a Drug for Your Rare Disease. When Do You Actually Get It?
- When a Clinical Trial Fails and It Was Your Family's Trial
- The Median Rare Disease Trial Recruits at Exactly One US Site
- What an FDA Clinical Hold Means When You're the One in the Trial
- Zilurgisertib Could Give FOP Patients a Third Treatment on September 26th
- The State of Rare Disease Clinical Trials With 75% of 2026 Behind Us
- 4 Rare Diseases Could Get Their First Treatment This September
- Opakalim, Azetukalner, and the Race to Bring Back Epilepsy's Lost Off Switch
- A New AI Tool Called MARRVEL-MCP Is Changing the Slowest Part of Rare Disease Diagnosis
- Rare Disease Diagnoses That Started With Something Else Entirely
- Lone Star Tick Bites and the Rare Diseases They Cause from Alpha-Gal Syndrome to Heartland Virus
- Rystiggo for Myasthenia Gravis and How It Compares to Vyvgart and Imaavy
- Alpha-Gal Syndrome: Medications, Vaccines, and Medical Products That Can Trigger a Reaction
- Casgevy vs. Lyfgenia: Comparing Sickle Cell Gene Therapies
- School Accommodations for a Child with a Rare Disease: A Parent's Field Guide
- hEDS, MCAS, POTS, MTHFR, and Tick-Borne Coinfections: When Rare Diagnoses Stack
- Heparin-Induced Thrombocytopenia: A New Drug Path After 25 Years
- Lonvo-Z and the First Phase 3 Win for In Vivo Gene Editing in HAE
- Why Rare Disease Diagnoses Still Take 6 Years, and How Genome Sequencing Can Cut It to Weeks
- The FDA's Plausible Mechanism Framework Could Unlock Gene Therapies for the Rarest Diseases
- What Happens When You Take a Rare Disease to the ER
- Ticks, Rare Disease, and the Coinfections Lyme Patients Have Been Told Don't Exist
- How to Read a ClinicalTrials.gov Listing Without a Medical Degree
- A Patient's Guide to Clinical Trial Participation
- Most Clinical Trial Finders Are Recruitment Tools in Disguise. We Built Something Else.
- Filspari Is the First FDA-Approved Treatment for FSGS. Here's What That Actually Means for Patients.
- A Quiet Crisis in Rare Disease Research: Trial Enrollment Is Slowing Just as Treatments Start Working
- Insurance Denied Your Medication. You Have More Power Than They Want You to Know.
- That Drug Your Child Takes? A Voucher Worth Millions Helped Make It Happen.
- Avlayah Is the First New Hunter Syndrome Treatment in 20 Years. Here's What Families Should Do Next.
- You Got Into a Clinical Trial. Now You Have to Get There.
- Dravet Syndrome Treatments in 2026: From Seizure Management to Gene Therapy
- First Gene Therapy for BAG3 Heart Failure Enters Clinical Trials: What Patients Should Know
- Tepezza Just Got a Major Upgrade: What the New At-Home Injection Means for Thyroid Eye Disease Patients
- A New ALS Trial Is Recruiting and It Learned from What Came Before
- 84% of Investors Are Pulling Back from Rare Disease. Here Is Why That Should Alarm Every Patient.
- From Zero Treatments to 5 in 3 Years: The IgA Nephropathy Breakthrough Nobody Saw Coming
- What a $4 Million Gene Therapy Actually Costs a Family in 2026
- What Happens After a Clinical Trial Ends - Your Options for Continued Access
- A New Kind of MS Drug Just Cleared Its Biggest Hurdle: What Fenebrutinib Means for Patients
- One Baby Changed Everything: How the FDA Opened the Door for Ultra-Rare Disease Treatments
- What Placebos and Randomization Actually Mean for You (In Plain English)
- MECP2 Gene Therapy for Rett Syndrome: What Families Should Know About the Trials in 2026
- The Hidden Costs of Joining a Clinical Trial (And How to Get Help Paying for Them)
- Regenxbio's Hunter Syndrome Gene Therapy Rejected: What Happened and What It Means
- When the Measuring Stick Moves: Biohaven, the FDA, and What It Means for SCA Patients