Students across 17 schools in Wagga Wagga, Australia, held a Superhero Day to raise money and awareness for Schimke immuno-osseous dysplasia (SIOD), a rare genetic disorder that claimed the life of 11-year-old Nate Lawson. The event honoured Nate's bravery and supported the paediatric ward at Wagga Base Hospital.
Long Châu, a Vietnamese pharmacy chain, has expanded to 34 provinces and launched a family health app, "Ví khỏe nhà ta," to consolidate spending and offer rewards. The company also aims to improve access to advanced medical solutions and rare disease treatments in Vietnam, partnering with international pharmaceutical companies.
Nantou County Chief Hsu Shu-hua will fund a trip to Japan for Huang Yun-tzu, a President's Education Award recipient with the rare disease White Sutton Syndrome. Despite her condition, Huang remains optimistic, studies hard, and volunteers.
Russia has completed development of three domestic drugs for Duchenne muscular dystrophy, short bowel syndrome, and cystic fibrosis. The medications were created by scientists at the Research Institute of Hygiene, Occupational Pathology, and Human Ecology of the FMBA.
Parents Jemma and Marvin Johnson are urging politicians to implement newborn heel prick testing for Metachromatic Leukodystrophy (MLD) after their seven-year-old son, Teddy, died from the rare degenerative disease. They argue early detection could have saved his life.
Dan Gilbert, owner of the Cleveland Cavaliers, is dedicating significant resources to finding a cure for neurofibromatosis (NF), a rare disease that took his son Nick's life in 2023. The Gilbert Family Foundation has raised millions for research and aims to eradicate the disease.
Hong Kong health authorities are seeking more information from the World Health Organization (WHO) on an outbreak of a deadly hantavirus strain capable of limited human-to-human transmission on a cruise ship in the Atlantic, while ramping up efforts to prevent the rare disease from reaching the city’s shores. The Department of Health’s Centre for Health Protection revealed on Thursday that it had contacted the WHO about the hantavirus cluster found on the MV Hondius after the vessel departed...
Ultragenyx’s Rare Bootcamp gives families a roadmap to help drive research and develop new treatments for rare diseases.
The rare disease is suspected to have killed three people so far.
The rare disease is suspected to have killed three people so far.
Marion Jones, diagnosed with rare autoimmune disorder Neuromyelitis Optica in 2020, will run the Boston Marathon on Monday, becoming a Six Star Finisher after completing all six World Marathon Majors. The disease left her partially paralyzed and unable to walk, but after intensive rehabilitation, she has completed six marathons and calls it a "victory lap" for the rare disease community.
