SANTA CRUZ, California – New Living with Lambert-Eaton Myasthenic Syndrome (LEMS), a rare autoimmune disorder affecting the nerves and muscles, often requires seeing multiple specialists to help with your condition. That’s partly because 50 percent to 60 percent of cases are paraneoplastic, meaning they co-occur with cancer, particularly small-cell lung...
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More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings highlight the need for...
Quinnipiac University held a symposium on March 24 at the North Haven campus to help bring awareness to rare diseases. The ninth annual Rare Disease Day Symposium was presented by the Frank H. Netter MD School of Medicine at Quinnipiac. Attendees were able to join in-person or virtually. The symposium...
Keira Mathewson is a very cute little girl, two months shy of her second birthday. She also has a brain disease that slows her development, reduces her movement and affects her speech. Keira, who lives with her parents Julie Lewis and Michael Mathewson at Brassall, will be one of the...
DURHAM, N.C. — The Rare Cancer Research Foundation (RCRF) is proud to announce an exciting collaboration with Spanios aimed at propelling the discovery and validation of groundbreaking therapeutic options for rare cancers. This partnership, facilitated through RCRF’s innovative initiative, Pattern.org, marks a significant step towards addressing the pressing need for...
CHENNAI — When Latha could not wash utensils or even pick up a handkerchief from the floor, she did not realise that she was suffering from takaysus arteritis, ‘pulseless disease’ a rare disorder that occurs in Asian women. Surgeons at the city-based M R Hospitals — Dr S Saravanan, Dr...
It was only dumb luck that Jason Morgan found out about his illness. He experienced frequent muscle pain but without any remedy. Years of tests, blood draws, and unanswered questions only yielded an answer after Morgan’s doctor connected the dots between his mother and his aunt. He had Burton Muscular...
When we think about common diseases or health conditions, diabetes, heart diseases and the likes top the list. Rare Disease Day, which falls on the last day of February, is all about raising awareness for rare diseases. This year, February 28 will see people raising awareness about diseases that aren’t...
Globally coordinated by The European Organization for Rare Diseases (EURORDIS), and over 65 national alliance patient organisation partners, Rare Disease Day aims to increase awareness and promote necessary changes for the 300 million people worldwide living with a rare disease. Over 600 events will be taking place this year in...
The University of Colorado Anschutz Medical Campus celebrated the global Rare Disease Day on February 28 with an event that highlighted the campus’ strengths in diagnosing and treating rare diseases and explored a vision for creating a regional rare disease hub. Campus experts, hospital and community partners, patients, and families...