NORD OT Research fund - frequently asked questions

National Organization for Rare Disorders - OT Research Grant and Fund / How to Donate

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NORD OT Research fund - frequently asked questions

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Orthostatic Tremor NORD Research Grant

Frequently asked questions:

• What is the NORD Research Grant Program?

NORD’s Research Grant Program provides seed grants to academic scientists for clinical studies related to development of potential new diagnostics or treatments for rare disease. In at least two cases, NORD grants have resulted ultimately in FDA-approved treatments for patients.

• Where does the money come from?

Patient groups are responsible for raising the money. In the case of the Orthostatic Tremor Research Grant the money is from People with OT, friends and family. In the research grant that was awarded last year, there was a surprise donation awarded from Lundbeck Inc, in the form of a special grant.

• How did the OT NORD fund start?

NORD created a program that would offload the extremely challenging aspects of handing the legal aspects, the paperwork and the administration of research grants. This created a very cost efficient path for rare disease groups to start something that would otherwise be impossible. At a small gathering of people with OT in 2008, several people volunteered to start the process of creating the Primary Orthostatic Tremor NORD Research Fund, and 8 years later the second research study is soon to begin. At the time of the meeting creating a research fund seemed impossible, it definitely surprised me! The failure would have been not to try.

• Who chooses the research?

NORD's Medical Advisory Committee (composed of leading academic scientific experts) reviews all of the applications and selects finalists. The finalists are invited to submit a full grant application describing their proposed project in detail. NORD's Medical Advisory Committee then reviews the full grant applications (peer review) and ranks them through a scoring system. The highest scoring grant applications are recommended for funding to NORD's Board of Directors who votes on the final grant awards.

• What can be expected from the research?

The only outcome with any certainty is to not try, to remain with the current knowledge of Orthostatic Tremor. The nature of research is that more is better, with each research study comes new knowledge, new paths to explore or simply knowing which to avoid.

• When is the next Orthostatic Tremor grant awarded?

This is up to the OT community. The fund continues to grow but with a rare disease it is challenged by the smaller number of people interested. Once the fund reaches it’s goal the process of sending out “Requests for Proposals” (RFPs) begins. It is quite a miracle that a tiny group of people, friends and family has both started a fund and initiated real research. You can find more information about the prior OT research studies on the OT website and the forum posts updates on the amount in the fund on a regular basis.

read more about the NORD and the UNMC fund here:
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