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

15 articles from the last 30 days matching "disease awareness"

NewsRSSToday

Words of wisdom for living well with Parkinson’s disease

A person with Parkinson's disease shares their experience living well with the condition after receiving deep brain stimulation surgery. They started a weekly walking group three years ago to stay active and connected with others. The article focuses on practical tips and lifestyle strategies for managing Parkinson's disease day-to-day.

WHY IT MATTERSThis firsthand account demonstrates how deep brain stimulation combined with regular physical activity and social engagement can help people with Parkinson's disease maintain quality of life and independence.
Good to knowParkinson's diseaseRead →
Clinical trialRSSToday

AAN 2026: Tavapadon helps delay levodopa start in early Parkinson’s

A new experimental drug called tavapadon from AbbVie helped people with early Parkinson's disease delay or avoid starting levodopa, which is the standard treatment for this condition. In a completed Phase 3 trial called TEMPO-4, most people taking tavapadon long-term did not need to start levodopa, and those already taking it didn't need to increase their dose. This suggests tavapadon could be a helpful new option for managing early Parkinson's symptoms.

WHY IT MATTERSIf approved, tavapadon could allow people with early Parkinson's to delay levodopa therapy, potentially postponing side effects that come with long-term use of this standard medication.
💬 Ask your doctorParkinson's diseaseRead →
NewsRSSYesterday

Parkinson’s psychosis and UTIs: Is there a connection?

Some people with Parkinson's disease experience hallucinations or false beliefs, which is called psychosis. However, sudden changes in thinking or behavior might actually be caused by a urinary tract infection (UTI) rather than Parkinson's itself. Learning to tell the difference between these two conditions helps doctors give the right treatment.

WHY IT MATTERSParkinson's patients experiencing sudden confusion or hallucinations need to know that a UTI could be the culprit—and treating the infection might resolve symptoms without changing Parkinson's medications.
💬 Ask your doctorParkinson's diseaseRead →
Clinical trialRSSYesterday

AAN 2026: VQ-101 reaches the brain, hits target in diverse Parkinson’s patients

Scientists tested a new pill called VQ-101 that can enter the brain and increase levels of a protective protein in people with Parkinson's disease. In early testing, the drug worked in patients both with and without a specific genetic change (GBA mutation). This is an important first step toward potentially helping different groups of Parkinson's patients.

WHY IT MATTERSThis is one of the first oral drugs shown to cross the blood-brain barrier and activate neuroprotective pathways in genetically diverse Parkinson's patients, potentially expanding treatment options beyond GBA-mutation carriers.
👁 Watch this spaceParkinson's diseaseRead →
NewsRSS2 days ago

Being a Parkinson’s caregiver meant carrying the weight

This article shares a personal story about someone who was a caregiver for their uncle who had Parkinson's disease. The piece focuses on the emotional and physical challenges of being a caregiver for a family member with this progressive neurological condition. It highlights how caregiving can be a heavy burden, both emotionally and practically.

WHY IT MATTERSParkinson's caregivers often experience significant emotional strain and isolation—this story validates those experiences and may help caregivers feel less alone in their struggles.
Good to knowParkinson's diseaseRead →
Clinical trialRSS2 days ago

AAN 2026: Parkinson’s cell therapy trial shows sustained benefits

A company called BlueRock Therapeutics tested a new cell therapy called bemdaneprocel for Parkinson's disease. In a small early-stage trial, patients who received one dose of this therapy showed improvement in their movement symptoms, and these improvements lasted for up to three years. This is promising because it suggests a single treatment might help Parkinson's patients for a long time.

WHY IT MATTERSIf bemdaneprocel continues to show sustained benefits in larger trials, it could offer Parkinson's patients a one-time treatment option instead of daily medications, potentially improving quality of life and treatment adherence.
👁 Watch this spaceParkinson's diseaseRead →
🔴 BreakingDrug approvalRSS3 days ago

FDA approves next-gen wearable sensor for tremor control in Parkinson’s

The FDA has approved an updated version of a wristwatch-like device called Cala kIQ Plus that helps reduce hand shaking in people with Parkinson's disease. This new version improves on the earlier Cala kIQ device. The device works by sending gentle electrical signals to help control tremor during movement.

WHY IT MATTERSPeople with Parkinson's disease who experience hand tremor during activities now have access to an improved wearable option that doesn't require surgery or daily medications.
💬 Ask your doctorParkinson's diseaseRead →
AdvocacyRSS3 days ago

How I wish I had prepared for advanced Parkinson’s

As Parkinson's disease progresses to advanced stages, it creates serious challenges for both patients and their caregivers—physically, emotionally, and financially. One family shares what they wish they had known earlier about preparing for these later stages and what lessons are helping them cope now.

WHY IT MATTERSPatients and caregivers can learn from this family's experience to better prepare emotionally, physically, and financially for advanced Parkinson's before crisis situations occur.
Good to knowParkinson's diseaseRead →
AdvocacyRSS3 days ago

Guest Voice: When Parkinson’s disease and bipolar disorder collide

This article is a personal account from someone living with both Parkinson's disease and bipolar disorder at the same time. The author discusses how having these two conditions together creates unique challenges for their mental and physical health. The piece highlights the importance of addressing mental health alongside neurological symptoms in Parkinson's care.

WHY IT MATTERSPatients with Parkinson's disease who also have bipolar disorder often face overlooked mental health needs, as treatment plans may focus primarily on movement symptoms while psychiatric care gets deprioritized.
💬 Ask your doctorParkinson's diseaseBipolar disorderRead →
PipelineRSS3 days ago

Amprion working to expand access globally to alpha-synuclein protein test

A company called Amprion is partnering with a university in Australia to make their alpha-synuclein test more available around the world. This test detects abnormal proteins in the brain that can help doctors diagnose Parkinson's disease and related conditions earlier and more accurately.

WHY IT MATTERSPatients with suspected Parkinson's disease or similar conditions may gain access to a diagnostic test that can identify their specific condition earlier, potentially allowing for treatment to start sooner.
Good to knowParkinson's diseaseDementia with Lewy bodiesAtypical parkinsonismRead →
NewsRSS3 days ago

When saying no feels like the hardest part of Parkinson’s caregiving

This article explores the emotional challenges caregivers face when caring for someone with Parkinson's disease, particularly the guilt that comes from saying no to requests or activities. The author shares a personal story about their uncle who loved going to drag racing events, highlighting how caregivers struggle with the difficult balance between protecting their loved one's safety and honoring their wishes and independence.

WHY IT MATTERSParkinson's caregivers often experience psychological burden and guilt that directly impacts their own health and ability to provide care — understanding these emotional challenges can help caregivers recognize they're not alone and seek support.
Good to knowParkinson's diseaseRead →
ResearchRSS3 days ago

Researchers ID compound that may slow Parkinson’s progression

Scientists at Florida International University found a compound called CTS2444-32 that may help slow Parkinson's disease by improving how mitochondria (the energy centers of cells) work. The compound works by reducing a protein called DRP1 that controls mitochondrial function, which helps prevent toxic proteins from building up in the brain—a key problem in Parkinson's.

WHY IT MATTERSIf CTS2444-32 proves effective in human trials, it could offer Parkinson's patients a new treatment option that targets the disease's underlying cause rather than just managing symptoms.
👁 Watch this spaceParkinson's diseaseRead →
Clinical trialRSS3 days ago

AAN 2026: Switch to Vyalev stops troublesome dyskinesia in trial

A new medication called Vyalev helped people with Parkinson's disease stop experiencing unwanted, uncontrolled movements (called dyskinesia) when they switched to it from other Parkinson's drugs. In two clinical trials, most people saw these troublesome movements go away within a few months of starting Vyalev. This is good news because dyskinesia is a common side effect that happens after taking Parkinson's medications for a long time.

WHY IT MATTERSIf you have Parkinson's disease and experience dyskinesia from your current levodopa treatment, switching to Vyalev could eliminate these involuntary movements within months rather than managing them as a permanent side effect.
💬 Ask your doctorParkinson's diseaseRead →
AdvocacyRSS3 days ago

How to explain Parkinson’s to family and friends

Talking to family and friends about your Parkinson's diagnosis doesn't have to be complicated. The key is to keep explanations simple and be honest about what you're experiencing. When people understand what's really going on, they're better able to help and support you in meaningful ways.

WHY IT MATTERSClear communication with your support network helps reduce isolation and ensures family and friends can provide practical help tailored to your actual needs as your condition changes.
Good to knowParkinson's diseaseRead →
ResearchRSS3 days ago

AAN 2026: Crexont linked to more on time in new Parkinson’s study

Researchers found that a Parkinson's disease medication called Crexont helped patients spend more time feeling better and less time experiencing symptoms when they switched from other levodopa treatments. The study showed improvements in movement control and daily functioning across different patient groups. This is early-stage research being presented at a medical conference.

WHY IT MATTERSIf you take levodopa for Parkinson's and struggle with 'off' periods when symptoms return between doses, Crexont may offer a way to extend your good symptom control time throughout the day.
💬 Ask your doctorParkinson's diseaseRead →

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