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
​2019
 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 $
​100,000.00
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
4/22/2019 6:41:43 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.2279: Safe Step Act.
Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced).
H.Res.161/S.Res.90: Expressing support for the designation of the last day of February each year as "Rare Disease Day".
H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases.
Pediatric subspecialty loan repayment reauthorization.
Newborn Screening Saves Lives Act Reauthorization (Legislation not yet introduced).
H.R.1379/S.560: Ensuring Lasting Smiles Act.
CMS-9923-NC: Request for Information Regarding Grandfathered Group Health Plans and Grandfathered Group Health Insurance Coverage.
H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019.
The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced).
Medical Nutrition Equity Act (Legislation not yet introduced).
H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect.

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
​
​
Rachel
Sher
​
Senior Policy Analyst, Food and Drug Administration; Senior FDA Counsel, Energy and Commerce Committee; FDA Counsel, U.S. Representative Henry Waxman

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 Program.
Section 1115 Waivers.
CMS-9922-P: Exchange Program Integrity Proposed Rule.
CMS-9926-P: Proposed HHS Notice of Benefit and Payment Parameters for 2020.

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), 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
​
​
Rachel
Sher
​
​

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.
Orphan Drug Act.
Orphan Drug Tax Credit.
H.R.1332: Fair Care Act of 2019.
FDA-2018-N-4171: Patient Engagement in Medical Device Clinical Trials.
Docket No. FDA-2018-D-4455-0001: Developing and Submitting Proposed Draft Guidance Relating to Patient Experience Data; Draft Guidance for Industry and Other Stakeholders.
Docket No. FDA-2015-D-2818: Rare Diseases: Common Issues in Drug Development, Guidance For Industry; Draft Guidance.
H.R.965/S.340: CREATES Act of 2019.
FR Document: 2019-01026 Citation: 84 FR 2340: Removal of Safe Harbor Protection for Rebates Involving Prescription Pharmaceuticals and Creation of New Safe Harbor Protection for Certain Point-of-Sale Reductions in Price on Prescription Pharmaceuticals and Certain Pharmacy Benefit Manager Service Fees.

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
​
​
Rachel
Sher
​
​
Rose
Avellino
​
​
Timothy
Boyd
​
​
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.
Food and Drug Administration Appropriations.
Emergency Medical Services for Children (EMSC) program appropriations.

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

U.S. HOUSE OF REPRESENTATIVES, U.S. SENATE, Food & Drug Administration (FDA)

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
​
​
Rachel
Sher
​
​

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
​
​
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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)