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

2 articles from the last 30 days matching "living with als"

NewsRSS2 days ago

Trial, error, and toe covers: Learning to adapt in life with ALS

A person living with ALS shares their experience learning to use ankle-foot orthoses (AFOs), which are braces that help with walking. At first, they didn't want to use them because they represented another big life change after their ALS diagnosis. But through trial and error, they found ways to adapt and make the braces work for them.

WHY IT MATTERSThis personal account offers practical insights into managing mobility challenges with ALS, which can help newly diagnosed patients understand what to expect and how others have successfully adapted to assistive devices.
Good to knowAmyotrophic Lateral SclerosisRead →
NewsRSS2 days ago

We must each find our own way as we learn to live with ALS

A person living with ALS is sharing their experience about staying active and maintaining muscle strength. They were unsure whether to write about this topic because they worried people might misunderstand their message. The author emphasizes that everyone with ALS may need to find their own approach to managing the disease.

WHY IT MATTERSThis personal perspective helps ALS patients understand that maintaining mobility is individual—what works for one person may not work for another, so they shouldn't feel pressured to follow someone else's exact approach.
Good to knowAmyotrophic Lateral SclerosisRead →

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