EveryLife Foundation for Rare Diseases
1 view • Jan 20, 2022
Chapters
Transcript
Follow along using the transcript.
Chapters
Introduction
Introduction
0:00
Introduction
0:00
Agenda
Agenda
1:03
Agenda
1:03
Sabah
Sabah
2:13
Sabah
2:13
Steve
Steve
3:12
Steve
3:12
FDA
FDA
4:14
FDA
4:14
User Fees
User Fees
7:38
User Fees
7:38
Presidents Request
Presidents Request
9:41
Presidents Request
9:41
Goals
Goals
10:33
Goals
10:33
Budget Authority appropriation
Budget Authority appropriation
11:08
Staff Intensive
Staff Intensive
11:45
Staff Intensive
11:45
Questions
Questions
12:40
Questions
12:40
Budgetary Threats
Budgetary Threats
13:39
Budgetary Threats
13:39
Federal Programs
Federal Programs
14:55
Federal Programs
14:55
The Good
The Good
18:12
The Good
18:12
The Bad
The Bad
19:21
The Bad
19:21
Presidents Budget
Presidents Budget
21:21
Presidents Budget
21:21
Newborn Screening
Newborn Screening
22:18
Newborn Screening
22:18
Contact Information
Contact Information
23:23
Contact Information
23:23
Angela Ramirez Holmes
Angela Ramirez Holmes
24:59
Angela Ramirez Holmes
24:59
Why California
Why California
26:08
Why California
26:08
Rare Disease Caucus
Rare Disease Caucus
26:50
Rare Disease Caucus
26:50
How to Help
How to Help
30:15
How to Help
30:15
Padu Physics
Padu Physics
34:15
Padu Physics
34:15
FDA Benefit Risk Framework
FDA Benefit Risk Framework
35:17
Coalition Support
Coalition Support
37:27
Coalition Support
37:27
Senate Update
Senate Update
38:17
Senate Update
38:17
Lynette LaRue
Lynette LaRue
39:41
Lynette LaRue
39:41
John Tester
John Tester
43:09
John Tester
43:09
Call to Action
Call to Action
50:14
Call to Action
50:14
Overall Goals
Overall Goals
52:47
Overall Goals
52:47
Federal Legislation
Federal Legislation
54:00
Federal Legislation
54:00
Task Force
Task Force
54:53
Task Force
54:53
Newborn Screening Update
Newborn Screening Update
55:56
Newborn Screening Update
55:56
Newborn Screening Challenges
Newborn Screening Challenges
56:07
Federal Recommendations
Federal Recommendations
57:55
Federal Recommendations
57:55
State Recommendations
State Recommendations
58:48
State Recommendations
58:48
Description
0Likes
1Views
2022Jan 20
Chapters
Introduction
Introduction
0:00
Introduction
0:00
Agenda
Agenda
1:03
Agenda
1:03
Sabah
Sabah
2:13
Sabah
2:13
Steve
Steve
3:12
Steve
3:12
Transcript
Follow along using the transcript.
Transcript
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