Yesterday, the House Energy and Commerce Committee released its much-anticipated discussion draft for its 21st Century Cures initiative. NORD President and CEO, Peter L. Saltonstall, issued the following statement in response.
The discussion paper issued by the House Energy and Commerce Committee on January 27 contains a number of ideas on how to advance the development of new medical therapies. A few provisions apply specifically to rare diseases, including adding six months to the patent life of orphan drugs. The Committee and its staff deserve praise for its effort in bringing these ideas together. NORD was pleased to have submitted a number of position papers for the Committee to consider.
NORD’s Advocacy Committee will now conduct an evaluation of the discussion paper. Once that process is completed, we will share our position with the Committee. We will continue to work closely with the Committee and members of the House and Senate as legislation moves forward.
Nothing is more important to the rare disease community than providing an environment conducive to the development of new therapies and access to them. We look forward to working with other like-minded advocates on these issues.
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:
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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