Lack of standard definition and community-based epidemiological data in India limits the estimation of prevalence and/or disease burden; though extrapolations at 6% to 8% show 72 to 96 million affected individuals. The Government of India approved the "National Policy for R...
Rare diseases (RD) are individually rare, although encompass a significant proportion of the population, affecting not only the individuals but also their families. In Brazil RD is defined by the Ministry of Health as a disorder that affects up to 65 individuals in 100,000, or 1.3 individuals ...
NORD is dedicated to supporting education, elevating care, advancing research, and driving policy for rare diseases
NORD is dedicated to supporting education, elevating care, advancing research, and driving policy for rare diseases
Policy recommendations for rare disease centres of expertise Rare diseases are a serious public health concern and are a priority in the EU. This study aims to develop policy recommendations for rare disease centres ... AM Syed,R Camp,C Mischorr-Boch,... - 《Evaluation & Program Planning》 ...
The following article first summarizes the current state of implementation, and then outlines in three sections, the short-term prospects for the further implementation of the NAP.se, which are already secured in terms of health policy; the medium-term prospects, some of which are in initial ...
ObjectiveTo describe the experiences of Australian paediatricians while caring for children with rare diseases, and their educational and resource needs.DesignA brief online survey was developed and deployed to a representative sample of 679 paediatricians from the Australian Paediatric Surveillance Unit data...
Rare disease drugs (orphan drugs) approved by NMPA before June 30, 2022. *The six conditions above only apply to drugs currently outside the NRDL. For NRDL-listed drugs which have major indication changes or seek contract renewal to stay in ...
Saving lives Significant advances in rare disease policy can be seen on a global scale throughout the years and has helped improve the quality of life for many around the world.
From the SitRoom to the E-Ring, the inside scoop on defense, national security and foreign policy.