News

NORD Issues Statement on Approval of 21st Century Cures Initiative and Introduction of OPEN Act

Publish date: June 11, 2015

 

References

NORD President and CEO Peter L. Saltonstall praised the House Energy and Commerce Committee for its recent unanimous approval of the 21st Century Cures Initiative, which includes broad-ranging provisions to enhance the development and delivery of medical treatments. Mr. Saltonstall also noted the introduction in the Senate of the OPEN Act, which encourages the repurposing of approved drugs for the treatment of life-threatening rare diseases. Read the NORD statement.

Recommended Reading

NORD to honor NIH Director and others at Portraits of Courage Celebration
MDedge Neurology
NORD urges Congress to support development of treatments for rare pediatric diseases
MDedge Neurology
ACMG and GMDI develop first guidelines for medical and dietary treatment of PKU
MDedge Neurology
Neurologists describe how “cyberconsults” may help those training for rare disease careers
MDedge Neurology
Genetic testing improves diagnostic yield in children with encephalopathy
MDedge Neurology
AAN and AANEM publish guides for evaluation, diagnosis and management of Congenital Muscular Dystrophy (CMD)
MDedge Neurology
AAN: Largest neuroleptic malignant syndrome study finds predictors of poor outcome
MDedge Neurology
A New Symptomatic Treatment for Lambert-Eaton Myasthenic Syndrome?
MDedge Neurology
Research Illuminates Genetic Forms of Epilepsy
MDedge Neurology
NORD, EURORDIS, and Rare Disease Organizations in 30 Nations Announce an International Rare Diseases Alliance (copy 1)
MDedge Neurology