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District Of Columbia Council Bill CER25-0020

District Of Columbia 2023-2024 Regular Session

District Of Columbia Council Bill CER25-0020 Compare Versions

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1- ENROLLED ORIGINAL
2-1
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6-A CEREMONIAL RESOLUTION
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8-25-20
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10-IN THE COUNCIL OF THE DISTRICT OF COLUMBIA
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12-February 7, 2023
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14-To recognize the need to raise awareness for rare diseases, honor rare disease patients and
15- families in the District, thank the National Organization for Rare Disorders and rare
16- disease advocacy groups for their tireless work, and declare February 28, 2023 as Rare
17- Disease Day in the District of Columbia.
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19- WHEREAS, there are over 7,000 rare diseases that have currently been identified;
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21- WHEREAS, a disease is considered a rare disease when fewer than 1 in 2,000 people are
22-affected by it;
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24- WHEREAS, 300 mil lion people worldwide are currently living with a rare disease, or
25-between 3.5 and 5.9% of the population. It is estimated that 25 -30 million Americans are living
26-with a rare disease;
27-
28- WHEREAS, because rare disease research is underfunded, over 90% of rare diseases
29-have no FDA-approved treatment available;
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31- WHEREAS, the National Organization for Rare Disorders, or NORD, is the largest
32-patient advocacy organization in the United States for individuals affected by rare diseases.
33-NORD is comprised of over 330 nonprofit member organizations nationally.
34-
35- WHEREAS, Rare Disease Day is celebrated annually on the last day of February and
36-recognized in over 100 countries worldwide;
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38- RESOLVED, BY THE COUNCIL OF THE DISTRICT OF COLUMBIA, That this
39-resolution may be cited as the “Rare Disease Day Recognition Resolution of 2023” .
40-
41- Sec. 2. The Council of the District of Columbia recognizes the need to raise awareness
42-for rare diseases, honors rare disease patients and families in the District, thanks the National
43-Organization for Rare Disorders and rare disease advocacy groups for their tireless work , and
44-declares February 28, 2023 as Rare Disease Day in the District of Columbia.
45-
46- Sec. 3. This resolution shall take effect immediately .
1+________________________________ ________________________________ 1
2+Councilmember Charles Allen Councilmember Trayon White, Sr. 2
3+ 3
4+ 4
5+________________________________ ________________________________ 5
6+Councilmember Christina Henderson Councilmember Janeese Lewis George 6
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8+ 8
9+________________________________ ________________________________ 9
10+Councilmember Matthew Frumin Councilmember Vincent Gray 10
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12+ 12
13+________________________________ ________________________________ 13
14+Councilmember Brianne K. Nadeau Councilmember Robert C. White, Jr. 14
15+ 15
16+ 16
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18+A CEREMONIAL RESOLUTION 18
19+______________ 19
20+ 20
21+IN THE COUNCIL OF THE DISTRICT OF COLUMBIA 21
22+__________________ 22
23+ 23
24+To recognize the need to raise awareness for rare diseases, honor rare disease patients and 24
25+ families in the District, thank the National Organization for Rare Disorders and rare 25
26+ disease advocacy groups for their tireless work, and declare February 28, 2023 as Rare 26
27+ Disease Day in the District of Columbia. 27
28+ 28
29+ WHEREAS, there are over 7,000 rare diseases that have currently been identified; 29
30+ 30
31+ WHEREAS, a disease is considered a rare disease when fewer than 1 in 2,000 people are 31
32+affected by it; 32
33+ 33
34+ WHEREAS, 300 million people worldwide are currently living with a rare disease, or 34
35+between 3.5 and 5.9% of the population. It is estimated that 25-30 million Americans are living 35
36+with a rare disease; 36
37+ 37
38+ WHEREAS, because rare disease research is underfunded, over 90% of rare diseases 38
39+have no FDA-approved treatment available. 39
40+ 40
41+ WHEREAS, the National Organization for Rare Disorders, or NORD, is the largest 41
42+patient advocacy organization in the United States for individuals affected by rare diseases. 42
43+NORD is comprised of over 330 nonprofit member organizations nationally. 43
44+ 44
45+ WHEREAS, Rare Disease Day is celebrated annually on the last day of February and 45
46+recognized in over 100 countries worldwide; 46 47
47+ RESOLVED, BY THE COUNCIL OF THE DISTRICT OF COLUMBIA, That this 48
48+resolution may be cited as the “Rare Disease Day Recognition Resolution of 2023”. 49
49+ 50
50+ Sec. 2. The Council of the District of Columbia recognizes the need to raise awareness 51
51+for rare diseases, honors rare disease patients and families in the District, thanks the National 52
52+Organization for Rare Disorders and rare disease advocacy groups for their tireless work, and 53
53+declares February 28, 2023 as Rare Disease Day in the District of Columbia. 54
54+ 55
55+ Sec. 3. This resolution shall take effect immediately upon the first date of publication in 56
56+the District of Columbia Register. 57