Florida HB 497: Neurofibromatosis Research Grants

Bill Text

CS/HB 497 2026

CODING: Words stricken are deletions; words underlined are additions.
hb497-01-c1
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F L O R I D A H O U S E O F R E P R E S E N T A T I V E S

A bill to be entitled 1
An act relating to the neurofibromatosis research 2
grants; creating s. 381.994, F.S.; creating the 3
Neurofibromatosis Disease Grant Program within the 4
Department of Health; providing purpose of the 5
program; requiring, subject to appropriation, the 6
program to award certain grants; providing 7
requirements for grant applications; requiring the 8
Rare Disease Advisory Council and the peer review 9
panels to establish and follow specified guidelines; 10
prohibiting members of the council and panels from 11
participating in certain discussions and decisions 12
under certain circumstances; authorizing certain 13
appropriation funds to be carried forward under 14
certain circumstances; providing an effective date. 15
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Be It Enacted by the Legislature of the State of Florida: 17
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Section 1. Section 381.994, Florida Statutes, is created 19
to read: 20
381.994 Neurofibromatosis Disease Grant Program— 21
(1)(a) There is created within the Department of Health 22
the Neurofibromatosis Disease Grant Program. The purpose of the 23
program is to advance the progress of research and cures for 24
neurofibromatosis by awarding grants through a competitive, 25

CS/HB 497 2026

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hb497-01-c1
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F L O R I D A H O U S E O F R E P R E S E N T A T I V E S

peer-reviewed process. 26
(b) Subject to legislative appropriation, the program 27
shall award grants for scientific and clinical research to 28
further the search for new diagnostics, treatments, and cures 29
for neurofibromatosis. 30
(2)(a) Applications for grants for neurofibromatosis 31
disease research may be submitted by any university or 32
established research institute in the state. All qualified 33
investigators in the state, regardless of institutional 34
affiliation, shall have equal access and opportunity to compete 35
for the research funding. Preference may be given to grant 36
proposals that foster collaboration among institutions, 37
researchers, and community practitioners, as such proposals 38
support the advancement of treatments and cures of 39
neurofibromatosis through basic or applied research. Grants 40
shall be awarded by the department, after consultation with the 41
Rare Disease Advisory Council, pursuant to s. 381.99, on the 42
basis of scientific merit, as determined by the competitive, 43
peer-reviewed process to ensure objectivity, consistency, and 44
high quality. The following types of applications may be 45
considered for funding: 46
1. Investigator-initiated research grants. 47
2. Institutional research grants. 48
3. Collaborative research grants, including those that 49
advance the finding of treatment and cures through basic or 50

CS/HB 497 2026

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hb497-01-c1
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F L O R I D A H O U S E O F R E P R E S E N T A T I V E S

applied research. 51
(b) To ensure appropriate and fair evaluation of grant 52
applications based on scientific merit, the department shall 53
appoint peer review panels of independent, scientifically 54
qualified individuals to review the scientific merit of each 55
proposal and establish its priority score. The priority scores 56
shall be forwarded to the council and must be considered in 57
determining which proposals shall be recommended for funding. 58
(3) The Rare Disease Advisory Council and the peer review 59
panels shall establish and follow rigorous guidelines for 60
ethical conduct and adhere to a strict policy with regard to 61
conflicts of interest. A member of the council or panel may not 62
participate in any discussion or decision of the council or 63
panel with respect to a research proposal by any firm, entity, 64
or agency that the member is associated with as a member of the 65
governing body or as an employee or with which the member has 66
entered into a contractual arrangement. 67
(4) Notwithstanding s. 216.301 and pursuant to s. 216.351, 68
the balance of any appropriation from the General Revenue Fund 69
for the Neurofibromatosis Disease Grant Program that is not 70
disbursed but that is obligated pursuant to contract or 71
committed to be expended by June 30 of the fiscal year in which 72
the funds are appropriated may be carried forward for up to 5 73
years after the effective date of the original appropriation. 74
Section 2. This act shall take effect July 1, 2026. 75