Organizations Filed Purposes:
Worldwide patient support program which includes a patient registry, a website with rare disease information & patient discussion forum.
Research Grant to University of PA
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 |
|---|
| Ange Van Der Velden | Director | 5 | $0 |
| Mitch Maersch | Director | 5 | $0 |
| Tiffany Ferry | Director | 30 | $0 |
| Scott Goldfarb | Director | 5 | $0 |
| Scott Weisner | Chariman | 10 | $0 |
| Jack Kelly | Pres/Acting Sec | 40 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202110549349300231_public.xml