Simon and George Cullen have a rare disease similar to vampirism. Simon, 13, and his brother George, 11 both suffer from Hypohidrotic Ectodermal Dysplasia (HED),...
fopworld.blogspot.com Its the story of patients who have disease causing their soft tissue - muscle, ligaments, tendons - to turn to literal stone. It's like...
February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. "Solidarity"...
The Philippine Society for Orphan Disorders, Inc. (PSOD) serves as a central network for the advocacy and effective coordination of all viable efforts to sustain...
Every day, organizations like the National Organization for Rare Disorders (NORD) work with patients and families to connect them with the resources they need to...
