AdvocacyRSS3 days ago
A patient with AATD (alpha-1 antitrypsin deficiency) is raising awareness that doctors aren't talking enough with their patients about air trapping—a condition where air gets stuck in the lungs and doesn't come out properly. Air trapping is a common problem for people with AATD, but many patients don't understand what it is or how to manage it. Better patient education about this issue could help people with AATD breathe better and manage their condition more effectively.
WHY IT MATTERSPatients with AATD who understand air trapping can work with their doctors to use breathing techniques and medications that specifically target this problem, potentially improving their lung function and quality of life.
NewsRSS3 days ago
ATTR-CM is a rare heart disease caused by abnormal protein buildup, but many patients also experience serious stomach and digestive problems that doctors don't always talk about. These gastrointestinal issues—like difficulty swallowing, nausea, and poor nutrient absorption—can be just as challenging as the heart symptoms and significantly impact quality of life. The article highlights that patients need better awareness and support for managing these hidden digestive complications alongside their heart treatment.
WHY IT MATTERSATTR-CM patients often suffer from overlooked gastrointestinal complications that can worsen malnutrition and quality of life, yet these symptoms receive less medical attention than cardiac manifestations—understanding this connection helps patients advocate for comprehensive care.
AdvocacyPUBMEDMar 26
This study looked at how patient groups led by people with rare diseases help fill gaps in education and awareness in Poland. Researchers interviewed 11 leaders of these patient groups to understand how they act as 'ambassadors' and 'advocates' to teach doctors, teachers, and the public about rare diseases. The findings show that patient advocacy groups play an important but often overlooked role in helping people understand and navigate rare diseases.
WHY IT MATTERSIf you have a rare disease, this research validates that patient-led advocacy groups are essential resources for getting accurate information and support when healthcare systems and professionals lack rare disease knowledge.