Welcome to NORD
News and Events
 |
NORD Announces Funding for Seven New Research Grants NORD is offering 7 funding opportunities through its clinical research program, that provides seed-money grants to academic scientists. More > |
 |
NORD will honor heroes and innovators at its 30th Anniversary Celebration on May 14. View the list of honorees > |
|
30th Anniversary of ODA and NORD A coalition of patient advocates played a major role in getting the Orphan Drug Act enacted. More > View video of NORD founder Abbey Meyers shown at FDA event> |
 |
Newborn Screening Reauthorization Act Introduced in House Reps. Roybal-Allard (D-CA) and Simpson (R-ID) recently introduced the Newborn Screening Saves Lives Reauthorization Act of 2013 in the House of Representatives. More> |
|
News for Patients
 |
Expanding Access to the Results of Federally Funded Research A policy now requires that science agencies make papers resulting from federally funded studies available online within 12 months after the results appear in a journal. More > |
 |
Nominate a Caregiver for a Shire 2013 BRAVE Award The BRAVE Awards recognize and honor everyday people who distinguish themselves as a caregiver to another individual(s). More > |
 |
Medtronic is Recruiting Runners Medtronic is recruiting runners who benefit from medical technology to participate in the 8th annual Medtronic Global Heroes program. More > |
 |
Chart Your Own Course Scholarship This Genzyme program will award eight scholarships of $2,500 each to students living with an LSD. More > |
News for Patient Organizations
 |
New Database Can Help Match Genomic Info. with Phenotype The PhenoDB enables any clinician to document information about symptoms, personal and family health history, and observable characteristics for patients with unusual genetic diseases. More> |
|
China Launches Rare Disease Alliance China Rare Diseases Prevention and Treatment Alliance has been formed by 17 medical institutions. More > |
 |
Join Whitehead Institute on Friday, May 3, in New York City for their signature spring event, the Whitehead Symposium. More > |
 |
Patient Advocacy Leadership Awards Genzyme has launched its third annual PAL Awards program for organizations that serve the lysosomal storage disorder patient community. More > |
News for Medical Professionals
 |
Pediatric Device Consortia Grant Program The 2013 Request for Applications for the Pediatric Device Consortia Grant Program has just published. More> |
|
Detection of Preventable Rare Diseases in Healthy People A provocative commentary discusses the potential benefits of expanding public health programs to identify people at risk for preventable rare diseases. More > |
|
ACMG Recommendations for Reporting of Incidental Findings The ACMG issued recommendations about reporting of incidental findings when patients undergo exome or genome sequencing. More> |
|
AAP Recommends Evaluation for Bleeding Disorders The symptoms of some bleeding disorders can be difficult to distinguish from abuse. AAP has guidance about when to evaluate for these conditions. More here and here. |
News for Industry
 |
New Drug Approvals in 2012 Highest in 16 Years The FDA approved 39 new drugs last year, the highest number since 1996. Approximately one-third of the approvals were for orphan drugs. Read more > |
 |
International Rare Diseases Research Consortium Conference (IRDiRC) The IRDiRC Conference will take place in Dublin, Ireland, on April 16-17. More > |
|
Orphan Drugs Research & Commercialization Conference This meeting in Boston on May 8-10 provides a unique forum for all stakeholders in the rare disease community to collaborate and build meaningful relationships. Read more > |
 |
Symposium on Best Practices in Clinical Study Design for Rare Diseases This symposium will focus on the unique challenges and solutions of rare disease product development. More > |
|
