Organizations Filed Purposes:
THE ORGANIZATION CREATES RESOURCES FOR THOSE AFFECTED BY THE CONNECTIVE TISSUE DISORDER, EHLERS-DANLOS SYNDROME, BY CREATING AND DISTRIBUTING ACCURATE INFORMATION, PROVIDING A NETWORK OF SUPPORT AND COMMUNICATION, AND FOSTERING AND FUNDING RESEARCH.
PROVIDE SUPPORT, COMMUNICATION, AND NETWORKING OPPORTUNITIES TO THOSE AFFECTED BY EHLERS-DANLOS SYNDROME.
SUPPORT FOR THE CONSTRUCTION, OPENING, AND OPERATION OF THE EDNF CENTER FOR CLINICAL CARE AT GBMCS HARVEY INSTITUTE FOR HUMAN GENETICS TO DEVELOP AND PROVIDE COMPREHENSIVE CLINICAL CARE FOR PATIENTS, PROFESSIONAL EDUCATION FOR PHYSICIANS, AND A ROBUST RESEARCH INITIATIVE TO ADVANCE THE UNDERSTANDING AND TREATMENT OF EHLERS-DANLOS SYNDROME.
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 |
|---|
| A Shane Robinson | EXECUTIVE DIRECTOR | 0 | $0 |
| Richard Malenfant | TREASURER | 0 | $0 |
| John Zonarich | SECRETARY | 1 | $0 |
| Robert Rubin | TREASURERCFO | 1 | $0 |
| Lara Bloom | EXECUTIVE DIRECTOR | 1 | $0 |
| Philip Hotchkiss | DIRECTOR | 1 | $0 |
| Woodrow Gandy | DIRECTOR | 1 | $0 |
| Edward Fitzgerald Iii | DIRECTOR | 1 | $0 |
| Elizabeth Herndon | DIRECTOR | 1 | $0 |
| Jane Mitakides | DIRECTOR | 1 | $0 |
| Susan Hawkins | CHAIR | 1 | $0 |
| Susan Haskell | DIRECTOR | 1 | $0 |
| Sandra A Chack | DIRECTOR | 1 | $0 |
| Linda Neumann-Potash | DIRECTOR | 1 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/201903189349310405_public.xml