The International Rare Diseases Research Consortium (IRDiRC) is a global collaborative initiative launched in 2011, aimed at tackling rare diseases through research. Here, we summarize IRDiRC’s vision and goals and...
India, which shares 17% of global population, has finally had its first dedicated policy on making treatment of rare diseases accessible and affordable. by Dr. Dipanjana Datta While rare diseases are...
When his daughter, Meredith Huml, was diagnosed — finally — with facioscapulohumeral (FSHD) muscular dystrophy in 2004, Raymond Huml immediately jumped into action, researching everything he could about the disease and reaching...
Inborn error of metabolism (IEM) is a spectrum of diseases that can affect the normal metabolism in children, said doctors. Screening of newborns or screening of parents during the pre-natal...
Aimed at raising money for treatment of rare diseases that need expensive and life-long treatment and affect a small percentage of the population News:- 1)Platform launched on August...
Parents hope government will step in to ensure continuous supply of medicines Next week, three children with Gaucher’s disease will get some relief as the Health Department will supply them...
The IGICH will face a serious difficulty from August 2021, the High Court observed on June 18 this year. BENGALURU: In an ongoing case in the Karnataka High Court...
BENGALURU: Three girls suffering from the rare disease, Spinal Muscular Atrophy, were administered the expensive gene therapy, Zolgensma, for free at Bangalore Baptist Hospital on Thursday. Each vial of the one-time...
