Soft drink and fast food companies often make children the primary targets of their advertising. These companies know that people frequently establish consumption habits at an impressionable young age that extend well into adulthood. Such a long-term strategy isn’t just smart business. It is essential to the survival of the brand.
As a second-year medical student with two younger brothers who have a rare genetic disease – ataxia telangiectasia – I think the rare disease community can learn and benefit from the strategies of these corporations. read more >
The cost of orphan drugs, and whether it is approaching a level where sustainability may be an issue, is a topic of intense interest in the rare disease community. However, an important new study reported at the recent American Society of Hematology meeting suggests that the overall budget impact of orphan drugs may be smaller than many people would assume. read more >
Latest grants continue NORD’s 26-year tradition of promoting life sciences research in rare diseases
NORD has announced six new research grants to advance safe, new treatment options for rare disease patients and their families. With the new grants, NORD upholds its time-honored tradition of funding basic and translational research in rare diseases. By providing oversight of ongoing research projects as well as the generation of seed grants for new research projects, NORD is a leader in promoting life sciences research in rare diseases. Throughout its 26-year history, NORD’s research grant program has administered more than 150 grants.
Grants are made possible by allies of the rare diseases community, including those mentioned below, that have generously supported research in rare diseases by donating to a NORD research fund. As the funds mature, NORD issues research requests for research proposals and disseminates information about the opportunity.
Researchers who are interested in applying for funding submit proposals in a competitive process in which they are independently reviewed by NORD’s Medical Advisory Committee. See NORD’s website (https://www.rarediseases.org/medical-professionals/research-grants) for a complete description of policies and procedures for NORD research grants.
Research grants awarded for 2014 requests for proposals include:
Today, NORD Vice President Diane Dorman is providing remarks before the FDA Oncologic Drugs Advisory Committee on the importance of distinguishable names for biologics as a fundamental core of maximizing the benefits for patients and minimizing any potential harm from biosimilars. This is part of NORD’s work to provide advocacy on behalf of the entire rare disease community. Read Diane’s remarks here and follow the conversation online under the hashtag, #ODAC.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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