Independent writer
Jason Hunter
Jason Hunter is the independent writer and editor behind Trial Friend. He writes and edits the News and Guides 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
107 articles, newest first. New ones also arrive in the RSS feed.
- Myasthenia Gravis Complement Drugs Range From About 4 Doses a Year to 365, and Cemdisiran Has an FDA Decision Due in November 2026
- For Retinitis Pigmentosa With Severe Vision Loss, Mogenry Is at the FDA and 12 of 37 Open Trials Allow Hand-Motion Vision
- Niemann-Pick Type C Before Age 6, What Adrabetadex Could Change on November 17th and Who Today's Medicines Leave Out
- SCN2A and SCN8A Epilepsy and Relutrigine, Why Your Child's Variant Type Matters Before the December 27th FDA Decision
- What Parents and Caregivers of a Child With IgA Nephropathy Should Know When Every Approved Drug Is Labeled for Adults
- Nearly Half of Costly New Prescriptions Are Never Picked Up, and the 2 Weeks After a Rare Disease Prescription That Decide It
- GIST After Imatinib, the 20-Year Wait to Beat Sunitinib, and the November 30th FDA Decision on Bezuclastinib
- Acromegaly Treatment Counted in Needles, Pills and Fasting Hours, as Oclaiz Heads for a December 18th FDA Decision
- Myeloma's Third CAR-T, Anito-cel, Faces a December 23rd FDA Decision Next to Carvykti and Abecma
- Cold Agglutinin Disease Treatment Before Winter, and Why Enjaymo and Rituximab Help Different Symptoms
- Starting Obstructive HCM Treatment With Myqorzo or a Beta Blocker, and What the MAPLE-HCM Trial Found
- Redemplo vs Tryngolza for Familial Chylomicronemia Syndrome, Compared on Injections, Side Effects, Price and the Gene Test Insurers Ask For
- What Patients With Autoimmune PAP Told the FDA, and How Molbreevi Measured Up Before Its November 22nd Decision
- Cushing's Syndrome Could Get a New Cortisol-Blocking Pill on December 17th, After the FDA Questioned Its Trial and Liver Safety
- Lyme and Coinfection Tests, Which Test Finds What, Who Decides What Counts as Positive, and Why Most Visits Offer Only One
- Adults With SMA Now Have a One-Time Gene Therapy in Itvisma, and Insurers Do Not All Agree on Who Gets It
- Gazyva for Membranous Nephropathy, What the 37% Remission Result Means for Your Next Treatment
- Troriluzole Is Back Under FDA Review for Spinocerebellar Ataxia, and This Time SCA Families May Get a Say
- Is Your Rare Disease on the FDA's Listening List? Many Are Not, and Comments on the New Rare Disease Framework Close December 11th
- Who Can Get Imaavy, the First FDA-Approved Treatment for Warm Autoimmune Hemolytic Anemia
- Your AML Gene Results May Come Back After Chemo Starts, and They Decide Which of 8 Targeted Drugs You Can Get
- A Natural Sugar Could Become the First Treatment for Limb-Girdle Muscular Dystrophy 2I/R9 on November 27th
- Iqirvo or Livdelzi? Choosing the Next PBC Pill When Ursodiol Falls Short
- What a Year of Gaucher Disease Treatment Costs, From Cerezyme Infusions to the Venglustat Pill Due for an FDA Decision November 25th
- Deramiocel Now Asks the FDA to Protect Arm Function in Duchenne, With a Decision Due November 22nd
- Who Runs Your Rare Disease's Clinical Trials, and Why It Changes What You'll Be Offered
- What Can a Baby With Niemann-Pick Type C Be Treated With Before the November 17th Adrabetadex Decision?
- Mailed Prescriptions From Canada After January 20th and the FDA Path Left for Domperidone
- Is a Health Website Tracking You? 5 Free Checks Before You Type a Diagnosis
- What Your Wilson Disease Copper Test Results Mean on Penicillamine, Trientine or Zinc
- Generic Promacta Keeps the Same ITP Dose While Alvaiz Changes the Number
- Ingrezza, Austedo or Tetrabenazine for Huntington's Chorea, and Where the AMT-130 Gene Therapy Stands Now
- Achondroplasia Treatment for Your Child, Voxzogo, Yuviwel and the 2 FDA Decisions Coming in February
- Admilparant, Rebuilt After a Liver Problem, Faces Liver Questions in Its Phase 3 IPF Trials
- Diane Wilkie's TTR Gene Test Came Back Positive Before She Had a Single Symptom
- 7 Rare Disease FDA Decisions Fall in the Last 9 Days of November
- Duchenne Exon Skipping by Exon, Which Drug Matches Your Child and 2 New Ones Under FDA Review
- Enspryng Is Approved for Thyroid Eye Disease as the First At-Home Shot, With 1 Trial Won and 1 Lost
- The NTRK Fusion Test Most Cancer Patients Never Get, and the 3 Pills That Depend on It
- Kesimpta vs Ocrevus vs Briumvi, and Why the Same B-Cell Drugs Now Run Through 6 Rare Diseases
- Hemophilia A Prophylaxis Compared, From Daily Alhemo to Every-Other-Month Qfitlia, With Denecimig Waiting on the FDA
- Myasthenia Gravis Drugs Compared by Antibody Type, How They Are Given and What You Will Pay
- Mitapivat Faces a February 1st FDA Decision for Sickle Cell Disease, With a Safety Program Question and the Oxbryta History in View
- 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
- Voceryq (INO-3107) Approved as the Second Treatment for Recurrent Respiratory Papillomatosis
- What Clinical Trials Are Available for Acromegaly? 18 Are Open, and 3 Have US Sites for Patients
- Lirafugratinib Is Approved as Lyrfigtu, the First FGFR2-Selective Drug for Bile Duct Cancer
- Camzyos Is the First Drug Approved for Teenagers With Obstructive HCM, Cleared on September 30th
- Aqneursa Is the First Approved Treatment for Ataxia-Telangiectasia, Nearly 8 Months After the Disease's Biggest Trial Missed Its Goal
- 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
- 7 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.
- IgA Nephropathy Went From Zero Approved Drugs to 7 in Under 5 Years, and Where Fabhalta Fits
- 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