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Von Hippel-Lindau Family Alliance
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| General Guidelines | Policies and Guidelines Governing Research Grants |
| Proposal Outline (Required) | Submission, Review and Award |
| Special Guidelines for Invited Applicants | Grant Management |
The VHL Family Alliance was established in 1993 as a national voluntary non-profit health organization whose primary goals are:
To disseminate timely and accurate information about von Hippel-Lindau (VHL) to patients, family members, physicians, and other interested parties
To provide means for patients and relatives to share experiences, support one another, and improve their medical care
To encourage, advise, and establish standards for clinics specializing in the diagnosis and treatment of von Hippel-Lindau
To encourage and foster biomedical and other pertinent research on von Hippel-Lindau syndrome.
To aid and encourage formation of Chapters and to provide assistance and guidance to enhance their effectiveness.
To provide limited, temporary financial support for innovative basic and clinical research relevant to the cause, pathogenesis, or treatment of von Hippel-Lindau disease.
A brief (1-2 page) summary of the proposal must be submitted prior to the official application and no later than March 14, to Dr. James Gnarra, Chairman, Research Committee, VHL Family Alliance, research@vhl.org. Upon review of this summary, the applicant will be told whether a full application is warranted. Applications may be submitted upon invitation only. Proposals may be submitted to or discussed with Dr. Gnarra at any time during the year.
This application package includes the policies and guidelines governing the Alliance's grants program. Please detach this section from the grant application and refer to it if you have questions about the grant process. For questions not covered in these guidelines, please contact the VHL Family Alliance Research Committee, James Gnarra, chair, research@vhl.org.
All inquiries and requests for applications should be submitted to:
Research grant awards are for new or established investigators wishing to pursue a novel idea or concept clearly related to VHL, where ongoing support is not able to fund the project.
An e-mailable copy (Word, rtf, or pdf) of the completed application must reach the VHL Family Alliance no later than the date indicated below. The review schedule is as follows:
Receipt Deadline March 31, 2008 Review by Research Advisory Board May 31, 2008 Review by VHLFA Board of Directors June 28, 2008 Applicant Notified July 10, 2008 Earliest Activation Date July 1, 2008
Send completed applications to:
All applications are evaluated by the Research Advisory Board of the VHL Fund for Cancer Research, whose recommendations are reviewed by the Board of Directors of the VHL Family Alliance for final approval and funding. Funding of awards is based on available funds, the priority score awarded each application, and the recommendations of the Research Advisory Board. Relevance of the proposed study to issues in VHL is also considered in determining awards. Priority will be given in 2008 to projects that meet one or more of the following:
All research awards are subject to observance of the regulations and policies of the VHL Family Alliance related to that category of research support.
Grants are made for a maximum of three years for up to $40,000 a year, and do not cover indirect costs.
Payments are made three times a year with the first payment being made following written acceptance by the grantee and receipt by the Alliance of a signed copy of its patent policy agreement. Future payments are contingent upon receipt and approval of progress reports as follows:
Progress Report Payment (Date Subject to Change) ---- July 2008 - Initial Payment Midterm - April 15, 2009 January, 2009 Final - June 30, 2009 July 30, 2009
When a paper or exhibit by an Awardee, based on the work supported by an Alliance award, is accepted for publication or presentation before a scientific organization, one pdf copy of said paper, or a suitable description of the exhibit, shall be forwarded to the Alliance on notice of such acceptance, together with the name of the publication or the organization accepting it, and the time and place of the meeting. This information shall be considered confidential by the Alliance until it is presented. All such papers and exhibits shall carry a credit line to the Von Hippel-Lindau Family Alliance.
No Awardee shall release for publication, other than through the usual professional or scientific journals, the results of his or her work without notifying the VHL Family Alliance of his or her intention to do so and furnishing a copy of the material intended for release. All announcements to any media of public information pertaining to a grantee and/or work to be done or accomplished under a VHL Family Alliance award must have the approval of the Awardee, the Awardee's institution, and the Alliance.
A final, audited financial report of grant expenditures and a refund of any monies unexpended during the period of the grant, must be submitted to the VHL Family Alliance within 120 days after the termination of the entire award. An annual financial report of total grant expenditures and a refund of any monies unexpended during the period of the grant must be submitted within 90 days after the grant period. Financial reports should be signed by the responsible institutional financial officer, as well as the Principal Investigator. Interim accounting may be requested by the VHL Family Alliance.
It is the responsibility of the Principal Investigator and the institution to inform the VHL Family Alliance of possible conflicts relative to duplicative funding of this project by other funding agencies. Failure to advise the Alliance of other sources of support can result in loss of funds for the VHL Family Alliance projects.
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