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.

Contact
AP
Alyss Patel
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Lobbyist Name Exclusive Duties Authorized On Withdrawn On

Lobbying Interests

Legislative Bills/Resolutions

Assembly Bill 744
Assembly Bill 744
Relating to: rare disease advisory council. (FE)

Bill Text and History

For
Notification Date
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.
Senate Bill 689
Senate Bill 689
Relating to: rare disease advisory council. (FE)

Bill Text and History

For
Notification Date
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.

Total Lobbying Effort

  2022
January - June
Total
Total Lobbying Expenditures 2022
January - June
$5,000.00
Total $5,000.00
Total Hours Communicating 2022
January - June
13.00
Total 13.00
Total Hours Other 2022
January - June
35.00
Total 35.00

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 25 %

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

Other Matters
2021
January - June
2021
July - December
2022
January - June
2022
July - December
Total
2021
January - June
2021
July - December
2022
January - June
75 %
2022
July - December
Total 75 %

Filed Statements of Lobbying Activity and Expenditures