NewsRSSToday
A person with spinal muscular atrophy (SMA) shares their personal experience managing chronic pain with fentanyl and other pain medications. Even though they've made lifestyle changes to reduce pain, they still experience unwanted side effects from the medications. The article emphasizes that everyone responds differently to pain treatments and encourages people to talk with their doctor before making any changes to their medications.
WHY IT MATTERSPeople with SMA and other conditions causing chronic pain need to understand that medication side effects are common and worth discussing with their healthcare team, as this firsthand account validates the real-world challenges of pain management beyond what clinical trials typically show.
NewsRSSMay 13
Cold agglutinin disease (CAD) is a rare blood disorder that affects how red blood cells work in cold temperatures. This article shares one patient's personal experience about learning to manage CAD through self-discovery and lifestyle changes that help them feel better and live more comfortably day-to-day.
WHY IT MATTERSCAD patients often feel isolated because the condition is rare and poorly understood—reading about another patient's real-world management strategies can provide practical ideas and emotional validation.
ResearchCLINICALTRIALSMay 5
Joined Bio is recruiting 100,000 people—both healthy individuals and those with conditions like lupus, celiac disease, and kidney disease—to participate in a research study. Participants will share health information, lifestyle details, blood or tissue samples, and feedback with researchers. This information will help scientists develop better tests, treatments, and cures for various diseases.
WHY IT MATTERSIf you have lupus, celiac disease, or chronic kidney disease, enrolling could directly contribute to research that develops better diagnostic tools and treatments specifically for your condition.
NewsRSSApr 24
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.
Clinical trialCLINICALTRIALSApr 1
Researchers are looking for 3,100 people to join a study about why patients don't take their medications as prescribed. The study will test a new approach to help people stick to their treatment plans, which could improve their health and reduce unnecessary hospital visits. About half of all patients don't take their medicines the right way, and this problem gets worse when treatment also requires lifestyle changes.
WHY IT MATTERSThis trial directly addresses medication non-adherence across multiple rare disease categories, meaning patients with rare conditions could benefit from proven strategies to better manage their treatments and health outcomes.