Organizations Filed Purposes:
NORD LEADS THE FIGHT TO IMPROVE THE LIVES OF PEOPLE AFFECTED BY RARE DISEASES THROUGH EDUCATION, PATIENT ASSISTANCE PROGRAMS, ADVOCACY, AND BY PROMOTING RESEARCH.
NORD STRIVES TO IMPROVE THE LIVES OF THOSE WITH RARE DISEASES THROUGH ASSISTANCE PROGRAMS, EDUCATION, ADVOCACY AND RESEARCH.
PATIENT ASSISTANCE PROGRAMS PROVIDE FINANCIAL ASSISTANCE TO HELP ELIGIBLE PATIENTS ACCESS LIFESAVING THERAPIES AND SERVICES PRESCRIBED BY THEIR PHYSICIANS. IN 2018 NORD PROVIDED FINANCIAL ASSISTANCE TO 7,459 PEOPLE WITH RARE DISEASES. IN ADDITION, NORD WORKS WITH ORGANIZATIONS CONDUCTING CLINICAL TRIAL S OF NEW TREATMENTS IN ARRANGING FOR PATIENTS WITH RARE DISEASES AND FAMILY MEMBERS TO TRAVEL TO THE SITES WHERE THE TRIALS ARE BEING CONDUCTED. IN 2018, THERE WERE 274 PATIENTS THAT NORD ASSISTED AS PART OF THAT SPECIAL CLINICAL TRIAL TRAVEL ASSISTANCE PROGRAM.
NORD EDUCATIONAL INITIATIVES STRIVE TO EMPOWER PATIENTS AND THEIR FAMILIES, INFORM STUDENTS OF ALL AGES, AND SUPPORT THE VITALLY IMPORTANT WORK OF PHYSICIANS AND OTHER HEALTHCARE PROFESSIONALS IN CREATING A BETTER UNDERSTANDING OF RARE DISEASES. THIS IS DONE THROUGH THE DEVELOPMENT OF NORD'S RARE DISEASE DATABASE, EDUCATIONAL WEBINARS AND VIDEOS, AND ROBUST EDUCATIONAL PROGRAMMING THROUGH NORD'S CME PARTNERSHIPS AND AT NORD'S RARE DISEASES AND ORPHAN PRODUCTS BREAKTHROUGH SUMMIT (RARE SUMMIT). IN 2018 OVER 800 PEOPLE ATTENDED NORD'S RARE SUMMIT WHERE KEY STAKEHOLDERS IN THE RARE DISEASE SPACE GATHER TO LEARN, CONNECT AND CREATE POSITIVE CHANGE FOR THE BROADER RARE DISEASE COMMUNITY. ON RARE DISEASE DAY (FEBRUARY 28, 2018) NORD HOSTED 178 EVENTS ACROSS THE COUNTRY. IN ADDITION, IN 2018, THERE WERE OVER 12.5 MILLION VISITORS TO THE ORGANIZATION'S WEBSITE TO READ NORD'S RARE DISEASE REPORTS, WHICH OFFER INFORMATION ABOUT EACH RARE DISEASE IN EASY-TO-UNDERSTAND LANGUAGE.
IN 2018, NORD HAS CONTINUED TO DEVELOP ITS NATUARL HISTORY/REGISTRY PLATFORM TO HELP RESEARCHERS BETTER UNDERSTAND THE PATIENT EXPERIENCE AND PROMOTE DEVELOPMENT OF INNOVATIVE, SAFE AND EFFECTIVE THERAPIES. AS OF DECEMBER 31, 2018, THERE WERE 7,556 PARTICIPANTS ACROSS 23 DIESASE-SPECIFIC DATABASES AS PART OF NORD'S REGISTRY PROGRAM.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Peter Saltonstall | PRESIDENT/CEO | 45 | $385,121 |
| Pamela Gavin | CHIEF OPERATING OFFICER | 45 | $296,720 |
| Alexa Moore | VP OF DEVELOPMENT | 40 | $205,192 |
| Tim Ehrhard | DIRECTOR OF IT | 35 | $164,800 |
| Vincent J Murphy Jr | VP FINANCE | 40 | $128,606 |
| James Berg | PRINCIPAL SOFTWARE ARCHITECT | 35 | $124,057 |
| Mary Dunkle | VP OF EDUCATIONAL INITIATI | 35 | $121,014 |
| Mark Lloyd | SENIOR SOFTWARE ARCHITECT | 35 | $117,734 |
| Kathleen Weis | DIRECTOR | 1 | $0 |
| Jim Palma | DIRECTOR | 3 | $0 |
| Vicki Mccarrell | DIRECTOR | 3 | $0 |
| Susan Hedstrom | DIRECTOR | 2 | $0 |
| Preston White Campbell Iii Md | DIRECTOR | 1 | $0 |
| Sarah Krug | DIRECTOR | 1 | $0 |
| Ronald J Bartek | DIRECTOR | 5 | $0 |
| Charles A Mohan Jr | DIRECTOR | 3 | $0 |
| Frederick Barr Md | DIRECTOR | 0 | $0 |
| Jonathan Haines Phd | DIRECTOR | 1 | $0 |
| Roger Ziegler | TREASURER | 2 | $0 |
| Marshall L Summar Md | CHAIRMAN | 10 | $0 |
| Steven Grossman | SECRETARY | 8 | $0 |
| Sheldon M Schuster Phd | VICE CHAIRMAN | 2 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/201943169349302719_public.xml