National Organization for Rare Disorders (NORD)
Registered Principal Details
Business Or Interest:
Health care issues impacting rare disease patients
Lobbying Interests:
Our organization is interested in helping support legislation to create a Rare Disease Advisory Council (RDAC) in the state of Wisconsin.
Health care issues impacting rare disease patients
Lobbying Interests:
Our organization is interested in helping support legislation to create a Rare Disease Advisory Council (RDAC) in the state of Wisconsin.
Contact
AP
Alyss Patel
1779 Massachusetts Ave. NW Suite 500
Washington, DC 20036
(203) 312-4274
apatel@rarediseases.org
https://rarediseases.org/
1779 Massachusetts Ave. NW Suite 500
Washington, DC 20036
(203) 312-4274
apatel@rarediseases.org
https://rarediseases.org/
Authorized Lobbyists
| Lobbyist Name | Exclusive Duties | Authorized On | Withdrawn On |
|---|---|---|---|
| Alyss Patel | Exclusive Duties Yes | Authorized On 6/27/2022 | Withdrawn On N/A |
Lobbying Interests
Legislative Bills/Resolutions
Assembly Bill 744
Relating to: rare disease advisory council. (FE)
Bill Text and History
1/5/2022
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.
Relating to: rare disease advisory council. (FE)
Bill Text and History
For
Notification Date1/5/2022
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.
Senate Bill 689
Relating to: rare disease advisory council. (FE)
Bill Text and History
1/5/2022
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.
Relating to: rare disease advisory council. (FE)
Bill Text and History
For
Notification Date1/5/2022
First Communication Date
N/A
Communication Information
The principal, a lobbyist authorized by the principal, or another individual acting on behalf of the principal do not intend to communicate on this matter.
Total Lobbying Effort
| 2022 January - June |
2022 July - December |
Total | |
|---|---|---|---|
| Total Lobbying Expenditures | 2022 January - June $5,000.00 |
2022 July - December $1,927.00 |
Total $6,927.00 |
| Total Hours Communicating | 2022 January - June 13.00 |
2022 July - December 3.60 |
Total 16.60 |
| Total Hours Other | 2022 January - June 35.00 |
2022 July - December 14.90 |
Total 49.90 |
Percent Allocation of Lobbying Effort
Legislative Bills/Resolutions
Relating to: rare disease advisory council. (FE)
| 2021 January - June |
2021 July - December |
2022 January - June |
2022 July - December |
Total |
|---|---|---|---|---|
| 2021 January - June |
2021 July - December |
2022 January - June 25% |
2022 July - December |
Total 18% |
Relating to: rare disease advisory council. (FE)
| 2021 January - June |
2021 July - December |
2022 January - June |
2022 July - December |
Total |
|---|---|---|---|---|
| 2021 January - June |
2021 July - December |
2022 January - June |
2022 July - December 25% |
Total 8% |
Budget Bill Subjects
No budget bill subjects found.
Administrative Rulemaking Proceedings
No administrative rulemaking proceedings found.
Topics Not Yet Assigned A Bill Or Rule Number
No topics found.
Minor Efforts
No minor efforts found.
Other Matters
Includes time spent on:
- Gubernatorial nominations
- Matters on which the organization made no lobbying communication