Rare disease news

FDA approvals, research breakthroughs, clinical trials, and advocacy updates

Curated and summarized by AI for patients and caregivers

🔍
AllDrug approvalsClinical trialsResearchGrants & fundingAdvocacy & policyPipeline
Show:All newsBreaking onlyImportant & breaking
Date:7 days30 days90 daysAll time

5 articles from the last 7 days matching "preprint"

ResearchBIORXIVToday

Preprint: Granulin loss and TMEM106B risk converge on lysosomal C-terminal fragment pathology in frontotemporal dementia

Scientists are studying how two genes work together to cause frontotemporal dementia, a type of brain disease that affects thinking and behavior. One gene called GRN normally makes a protein that protects brain cells, but when it's broken, people can develop dementia. Another gene called TMEM106B can either increase or decrease the risk of getting sick. This research helps explain why some people with the broken GRN gene stay healthy their whole lives while others get dementia.

WHY IT MATTERSIf you or a family member carries a GRN mutation, understanding how TMEM106B variants modify your risk could eventually help doctors predict who will develop frontotemporal dementia and when, potentially enabling earlier monitoring or future preventive treatments.
Good to knowFrontotemporal dementiaFrontotemporal dementia with granulin mutationsRead →
ResearchBIORXIVYesterday

Preprint: Genotype-Based Severity Scoring System in Wolfram Syndrome

Wolfram syndrome is a rare genetic disorder that causes diabetes, vision loss, hearing loss, and brain problems. Researchers created a new scoring system that looks at the specific genetic mutations in the WFS1 gene to predict how severe a patient's symptoms will be and when they might appear. This system could help doctors understand what to expect for each patient based on their individual genetic makeup.

WHY IT MATTERSIf validated, this genotype-based scoring system could allow doctors to predict disease progression and symptom onset in individual Wolfram syndrome patients, enabling earlier intervention and personalized monitoring strategies.
Good to knowWolfram syndromeRead →
ResearchBIORXIVYesterday

Preprint: Fasting reverses PLN R14del-mediated cardiomyopathy through lysosomal reactivation

Scientists discovered that fasting may help reverse heart damage caused by a specific genetic mutation in the PLN gene called R14del. This mutation causes a common type of inherited heart disease where abnormal protein clumps build up in heart cells. The research shows that fasting activates the cell's cleanup system (lysosomes) to remove these harmful clumps and restore heart function.

WHY IT MATTERSIf confirmed in human studies, fasting could offer PLN R14del cardiomyopathy patients a non-drug intervention to potentially reverse heart damage, though this is currently only demonstrated in laboratory research and requires clinical validation.
👁 Watch this spacePLN R14del cardiomyopathydilated cardiomyopathyarrhythmogenic cardiomyopathyRead →
ResearchBIORXIV6 days ago

Preprint: Blood-based RNA-Seq of 5412 individuals with rare disease identifies new candidate diagnoses in the National Genomic Research Library

Researchers analyzed blood samples from over 5,400 people with rare genetic diseases to see if a test called RNA-Seq could help find the genetic cause of their conditions. They found that this blood test works better for some diseases than others, and they used special computer programs to spot unusual gene activity patterns that might explain why people got sick. This study shows that blood tests could be a useful tool to help diagnose rare diseases alongside other genetic tests.

WHY IT MATTERSIf you have an undiagnosed rare disease, this research suggests blood-based RNA testing could help identify the genetic cause—potentially leading to a diagnosis after years of searching.
Good to knowRead →
ResearchBIORXIV6 days ago

Preprint: Plasma proteomics identifies early markers of endothelial and inflammatory activation associated with dengue disease severity in children

Researchers studied blood samples from children with dengue virus infection to find early warning signs that could predict who will develop severe disease. By analyzing proteins in the blood, they identified markers related to inflammation and blood vessel damage that appear in children who get sicker. This discovery could help doctors quickly identify which children need more intensive care.

WHY IT MATTERSIf validated, these protein markers could enable doctors to predict dengue severity within hours of diagnosis in children, allowing earlier intervention before complications like hemorrhagic fever or shock develop.
👁 Watch this spacedengue feverdengue hemorrhagic feverdengue shock syndromeRead →

Get personalized rare disease news

Follow your conditions to see news about the diseases that matter to you — FDA approvals, trial openings, and research breakthroughs.

Create free account →Browse diseases