H 497

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  CS/HB 497  2026
1A bill to be entitled
2An act relating to the neurofibromatosis research
3grants; creating s. 381.994, F.S.; creating the
4Neurofibromatosis Disease Grant Program within the
5Department of Health; providing purpose of the
6program; requiring, subject to appropriation, the
7program to award certain grants; providing
8requirements for grant applications; requiring the
9Rare Disease Advisory Council and the peer review
10panels to establish and follow specified guidelines;
11prohibiting members of the council and panels from
12participating in certain discussions and decisions
13under certain circumstances; authorizing certain
14appropriation funds to be carried forward under
15certain circumstances; providing an effective date.
16
17Be It Enacted by the Legislature of the State of Florida:
18
19Section 1.  Section 381.994, Florida Statutes, is created
20to read:
21381.994       Neurofibromatosis Disease Grant Program—
22(1)(a)       There is created within the Department of Health
23the Neurofibromatosis Disease Grant Program. The purpose of the
24program is to advance the progress of research and cures for
25neurofibromatosis by awarding grants through a competitive,
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26    peer-reviewed process.
27(b)      Subject to legislative appropriation, the program
28    shall award grants for scientific and clinical research to
29    further the search for new diagnostics, treatments, and cures
30    for neurofibromatosis.
31(2)(a)       Applications for grants for neurofibromatosis
32    disease research may be submitted by any university or
33    established research institute in the state. All qualified
34    investigators in the state, regardless of institutional
35    affiliation, shall have equal access and opportunity to compete
36    for the research funding. Preference may be given to grant
37    proposals that foster collaboration among institutions,
38    researchers, and community practitioners, as such proposals
39    support the advancement of treatments and cures of
40    neurofibromatosis through basic or applied research. Grants
41    shall be awarded by the department, after consultation with the
42    Rare Disease Advisory Council, pursuant to s. 381.99, on the
43    basis of scientific merit, as determined by the competitive,
44    peer-reviewed process to ensure objectivity, consistency, and
45    high quality. The following types of applications may be
46    considered for funding:
471.      Investigator-initiated research grants.
482.      Institutional research grants.
493.      Collaborative research grants, including those that
50    advance the finding of treatment and cures through basic or
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51    applied research.
52(b)     To ensure appropriate and fair evaluation of grant
53    applications based on scientific merit, the department shall
54    appoint peer review panels of independent, scientifically
55    qualified individuals to review the scientific merit of each
56    proposal and establish its priority score. The priority scores
57    shall be forwarded to the council and must be considered in
58    determining which proposals shall be recommended for funding.
59(3)     The Rare Disease Advisory Council and the peer review
60    panels shall establish and follow rigorous guidelines for
61    ethical conduct and adhere to a strict policy with regard to
62    conflicts of interest. A member of the council or panel may not
63    participate in any discussion or decision of the council or
64    panel with respect to a research proposal by any firm, entity,
65    or agency that the member is associated with as a member of the
66    governing body or as an employee or with which the member has
67    entered into a contractual arrangement.
68(4)     Notwithstanding s. 216.301 and pursuant to s. 216.351,
69    the balance of any appropriation from the General Revenue Fund
70    for the Neurofibromatosis Disease Grant Program that is not
71    disbursed but that is obligated pursuant to contract or
72    committed to be expended by June 30 of the fiscal year in which
73    the funds are appropriated may be carried forward for up to 5
74    years after the effective date of the original appropriation.
75Section 2.  This act shall take effect July 1, 2026.
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