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
55 KENOSIA AVENUE
 Address2
​
City
DANBURY
 State
CT
 Zip Code
06813-1296
 Country
USA

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

City
​
State
​
Zip Code
​
Country
​
4a. Contact Name b. Telephone Number c. E-mail
​Mrs.
​Melanie Buzzelli
​2025453826
​mbuzzelli@rarediseases.org
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
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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 $
​
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: Paul Melmeyer
 Date
1/25/2019 10:31:41 AM

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

Medicare Part D
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; H.Res.1154
A resolution affirming the importance of the Orphan Drug Act, applauding the life-saving accomplishments of the Act during its 35-year history, and recognizing the need to continue support for research and development of new therapies for rare diseases; S.Res.690
Step therapy in Medicare Advantage plans
Restoring the Patient's Voice Act of 2017; H.R.2077
Rare disease Advancement, Research, and Education Act of 2018; H.R.5115
National Institutes of Health funding
Food and Drug Administration appropriations
Orphan Drug Act
Medical Nutrition Equity Act of 2017; H.R.2587, S.1194
Short-term, limited-duration health plans
Association health plans
Section 1115 waivers
Section 1332 waivers
Copay accumulator programs
FY19 Labor, Health and Human Services, Education/Defense appropriations conference report; H.R.6157
Medicaid expansion
Pediatric subspecialty loan repayment reauthorization
Patient-focused drug development
Human gene therapy for rare diseases
Rare disease early development and the role of pre-investigational new drug application meetings
International pricing index model for Medicare part B drugs
Newborn Screening Saves Lives Act reauthorization
Neurological Conditions Surveillance System funding
MODERN Labeling Act of 2018; S.3519
ENROLL Act of 2018; H.R.7102

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

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

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

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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
​
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ISSUE UPDATE

24. General lobbying issue that no longer pertains

​
​
​
​
​
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​
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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