Clerk of the House of Representatives
Legislative Resource Center
135 Cannon Building
Washington, DC 20515
http://lobbyingdisclosure.house.gov 		Secretary of the Senate
Office of Public Records
232 Hart Building
Washington, DC 20510
http://www.senate.gov/lobby
LOBBYING REPORT

Lobbying Disclosure Act of 1995 (Section 5) - All Filers Are Required to Complete This Page

1. Registrant Name Organization/Lobbying Firm Self Employed Individual
National Organization for Rare Disorders, Inc. (NORD)

2. Address

Address1
1779 Massachusetts Avenue, NW
 Address2
​Suite 500
City
Washington
 State
DC
 Zip Code
20036
 Country
USA

3. Principal place of business (if different than line 2)

City
​Danbury
 State
​CT
 Zip Code
​06810
 Country
​USA
4a. Contact Name b. Telephone Number c. E-mail
​Mrs.
​Beth Anne Cole
​2025453826
​bethannec@gmail.com
5. Senate ID#
​28264-12
7. Client Name Self Check if client is a state or local government or instrumentality
​National Organization for Rare Disorders, Inc. (NORD)
6. House ID#
​306890000
TYPE OF REPORT 8. Year
​2018
 Q1 (1/1 - 3/31) Q2 (4/1 - 6/30) Q3 (7/1 - 9/30) Q4 (10/1 - 12/31)

9. Check if this filing amends a previously filed version of this report

10. Check if this is a Termination Report Termination Date
​
11. No Lobbying Issue Activity
INCOME OR EXPENSES - YOU MUST complete either Line 12 or Line 13
12. Lobbying 13. Organizations
INCOME relating to lobbying activities for this reporting period was: EXPENSE relating to lobbying activities for this reporting period were:
Less than $5,000
Less than $5,000
$5,000 or more $
​
$5,000 or more $
​80,000.00
Provide a good faith estimate, rounded to the nearest $10,000, of all lobbying related income for the client (including all payments to the registrant by any other entity for lobbying activities on behalf of the client). 14. REPORTING Check box to indicate expense accounting method. See instructions for description of options.
Method A. Reporting amounts using LDA definitions only

Method B. Reporting amounts under section 6033(b)(8) of the Internal Revenue Code

Method C. Reporting amounts under section 162(e) of the Internal Revenue Code

Signature
Digitally Signed By: Beth Anne Cole
 Date
7/23/2019 12:26:25 PM

LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.

15. General issue area code HCR

16. Specific lobbying issues

Health issues impacting patients with rare diseases.
H.R.2077: Restoring the Patient's Voice Act of 2017.
H.R.5115: Rare Disease Advancement, Research, and Education (RARE) Act of 2018.
H.R.2587/S.1194: S.1194 - Medical Nutrition Equity Act of 2017.
Short-term, limited-duration health plans.
Association health plans.
Pediatric subspecialty loan repayment reauthorization.
Human gene therapy for rare diseases.
Newborn Screening Saves Lives Act reauthorization.
Neurological Conditions Surveillance System funding.
H.R.7102: ENROLL Act of 2018.

17. House(s) of Congress and Federal agencies Check if None

U.S. HOUSE OF REPRESENTATIVES, U.S. SENATE, Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), Health & Human Services - Dept of (HHS), Natl Institutes of Health (NIH)

18. Name of each individual who acted as a lobbyist in this issue area

First Name Last Name Suffix Covered Official Position (if applicable) New
Paul
Melmeyer
​
​
Melanie
Buzzelli
​
​
Peter
Saltonstall
​
​

19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None

​

LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.

15. General issue area code MMM

16. Specific lobbying issues

Medicare issues impacting patients with rare diseases.
Medicare Part D.
Step therapy in Medicare Advantage plans.
Section 1115 waivers.
Section 1332 waivers.
Copay accumulator programs.
Medicaid expansion.
International pricing index model for Medicare part B drugs.

17. House(s) of Congress and Federal agencies Check if None

U.S. HOUSE OF REPRESENTATIVES, U.S. SENATE, Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), Health & Human Services - Dept of (HHS), Natl Institutes of Health (NIH)

18. Name of each individual who acted as a lobbyist in this issue area

First Name Last Name Suffix Covered Official Position (if applicable) New
Paul
Melmeyer
​
​
Melanie
Buzzelli
​
​
Peter
Saltonstall
​
​

19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None

​

LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.

15. General issue area code PHA

16. Specific lobbying issues

Pharmaceutical issues impacting patients with rare diseases.
H.Res.1154/S.Res.690: Affirming the importance of the Orphan Drug Act, applauding its lifesaving contributions over its 35-year history, and recognizing the need to continue supporting research and development for rare diseases.
Patient-focused drug development.
Rare disease early development and the role of pre-investigational new drug application meetings.
S.3519: MODERN Labeling Act.

17. House(s) of Congress and Federal agencies Check if None

U.S. HOUSE OF REPRESENTATIVES, U.S. SENATE, Health & Human Services - Dept of (HHS), Natl Institutes of Health (NIH)

18. Name of each individual who acted as a lobbyist in this issue area

First Name Last Name Suffix Covered Official Position (if applicable) New
Paul
Melmeyer
​
​
Melanie
Buzzelli
​
​
Peter
Saltonstall
​
​

19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None

​

LOBBYING ACTIVITY. Select as many codes as necessary to reflect the general issue areas in which the registrant engaged in lobbying on behalf of the client during the reporting period. Using a separate page for each code, provide information as requested. Add additional page(s) as needed.

15. General issue area code BUD

16. Specific lobbying issues

Appropriations for patients with rare diseases.
National Institutes of Health Funding.
Food and Drug Administration Funding.
H.R.6157: Department of Defense and Labor, Health and Human Services, and Education Appropriations Act, 2019 and Continuing Appropriations Act, 2019.

17. House(s) of Congress and Federal agencies Check if None

U.S. HOUSE OF REPRESENTATIVES, U.S. SENATE, Food & Drug Administration (FDA), Health & Human Services - Dept of (HHS)

18. Name of each individual who acted as a lobbyist in this issue area

First Name Last Name Suffix Covered Official Position (if applicable) New
Paul
Melmeyer
​
​
Melanie
Buzzelli
​
​
Peter
Saltonstall
​
​

19. Interest of each foreign entity in the specific issues listed on line 16 above Check if None

​

Information Update Page - Complete ONLY where registration information has changed.

20. Client new address

Address
​
City
​
State
​
Zip Code
​
Country
​

21. Client new principal place of business (if different than line 20)

City
​
State
​
Zip Code
​
Country
​

22. New General description of client’s business or activities

​

LOBBYIST UPDATE

23. Name of each previously reported individual who is no longer expected to act as a lobbyist for the client

First Name
Last Name
Suffix
First Name
Last Name
Suffix
1
​
​
​
3
​
​
​
2
​
​
​
4
​
​
​

ISSUE UPDATE

24. General lobbying issue that no longer pertains

​
​
​
​
​
​
​
​
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AFFILIATED ORGANIZATIONS

25. Add the following affiliated organization(s)

Internet Address:

Name Address Principal Place of Business
(city and state or country)
Street Address
City State/Province Zip Country
City
State Country

26. Name of each previously reported organization that is no longer affiliated with the registrant or client

1 2 3

FOREIGN ENTITIES

27. Add the following foreign entities:

Name Address Principal place of business
(city and state or country) 		Amount of contribution for lobbying activities Ownership percentage in client
Street Address
City State/Province Country
City
State Country
%

28. Name of each previously reported foreign entity that no longer owns, or controls, or is affiliated with the registrant, client or affiliated organization

1 3 5
2 4 6

CONVICTIONS DISCLOSURE

29. Have any of the lobbyists listed on this report been convicted in a Federal or State Court of an offense involving bribery, extortion, embezzlement, an illegal kickback, tax evasion, fraud, a conflict of interest, making a false statement, perjury, or money laundering?

Lobbyist Name Description of Offense(s)