Rare Disease Company Coalition Inc
Rare Disease Company Coalition Inc's network
29 people1 organisationi29 people and 1 organisation on this map.The large node is the subject of this page. Solid lines are what the register itself records (29). Violet dotted lines (2) are likely: the same full name sits on the current board of another organisation in the same register and region. Form 990 filings give names without a person identifier; SEC insider filings carry a CIK. It may be a different person.The board
29 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations in the tables. The network map shows same-name matches as likely links only, never as confirmed.Time served and departures are observed across annual filings. Observed time served is a lower bound - a member may have joined before the first year on record. The organisation reported 26 voting members of its governing body on its latest Form 990 Part VI; we list 29 in Part VII (Part VII does not always name every voting member).| Name | Role as filed | Since | On the board |
|---|---|---|---|
| Curt Oltmans Chair | Chair | 2021 | 5 yrs |
| Amanda Malakoff | Board Member | 2021 | 5 yrs |
| Ben Harshbarger (also filed as Ben Harshbarger) | Board Member | 2022 | 4 yrs |
| Chris Porter | Treasurer | 2022 | 4 yrs |
| Cyndi Goss Board Member | From 11/2024 to 12/2024 | 2024 | 2 yrs |
| Davelyn Hood | Board Member - Until 09/2024 | 2021 | 5 yrs |
| Deirdre Parsons | Board Member | 2021 | 5 yrs |
| DEL Lebel (also filed as Del Lebel) | Vice-Chair | 2022 | 4 yrs |
| Diane Berry | Member, Commercial at-Large | 2021 | 5 yrs |
| Eric Endicott | Board Member | 2023 | 3 yrs |
| Francesca Tedesco | Board Member | 2023 | 3 yrs |
| Gina Cioffi | Board Member | 2021 | 5 yrs |
| Izzy Tyszler | Board Member | 2023 | 3 yrs |
| Jacqui Kirby | Board Member | 2023 | 3 yrs |
| Jill Yersak | Board Member | 2023 | 3 yrs |
| Kathryn Lowell | Board Member | 2021 | 5 yrs |
| Kathy Perez | Company secretary | 2023 | 3 yrs |
| Katie Landes | Board Member | 2023 | 3 yrs |
| Lauren Walrath | Board Member | 2022 | 4 yrs |
| Lisa Kahlman | Board Member | 2023 | 3 yrs |
| Matthew Winton (also filed as Matt Winton) | Member, Pre-Commercial at-Large | 2023 | 3 yrs |
| MAX Bronstein Member Pre- | Commercial at-Large - Until 06/2024 | 2024 | 2 yrs |
| MEG Alexander | Board Member - Until 09/2024 | 2023 | 3 yrs |
| Peter Norman Board Member | From 09/2024 to 12/2024 | 2024 | 2 yrs |
| Raquel Cabo Board Member | From 09/2024 to 12/2024 | 2024 | 2 yrs |
| Sonya Weigle | Board Member | 2023 | 3 yrs |
| Susan Stewart Board Member | From 09/2024 to 12/2024 | 2024 | 2 yrs |
| Susanna Hastings Board Member | From 07/2024 to 12/2024 | 2024 | 2 yrs |
| Vish Seshadri | Board Member | 2024 | 2 yrs |
Pay and hours
year to 31 December 2024iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.| Name | Title as filed | Hours a week | Pay from the organisation | Related organisations | Other |
|---|---|---|---|---|---|
| Curt Oltmans | Chair | 2 | $0 | ||
| Del Lebel | Vice-Chair | 2 | $0 | ||
| Chris Porter | Treasurer | 2 | $0 | ||
| Kathy Perez | Secretary | 2 | $0 | ||
| Diane Berry | Member, Commercial at-Large | 2 | $0 | ||
| Max Bronstein Member Pre- | Commercial at-Large - Until 06/2024 | 2 | $0 | ||
| Matthew Winton | Member, Pre-Commercial at-Large | 2 | $0 | ||
| Meg Alexander | Board Member - Until 09/2024 | 0.5 | $0 | ||
| Raquel Cabo Board Member | From 09/2024 to 12/2024 | 0.5 | $0 | ||
| Gina Cioffi | Board Member | 0.5 | $0 | ||
| Eric Endicott | Board Member | 0.5 | $0 | ||
| Cyndi Goss Board Member | From 11/2024 to 12/2024 | 0.5 | $0 | ||
| Ben Harshbarger | Board Member | 0.5 | $0 | ||
| Susanna Hastings Board Member | From 07/2024 to 12/2024 | 0.5 | $0 | ||
| Davelyn Hood | Board Member - Until 09/2024 | 0.5 | $0 | ||
| Lisa Kahlman | Board Member | 0.5 | $0 | ||
| Jacqui Kirby | Board Member | 0.5 | $0 | ||
| Katie Landes | Board Member | 0.5 | $0 | ||
| Kathryn Lowell | Board Member | 0.5 | $0 | ||
| Amanda Malakoff | Board Member | 0.5 | $0 | ||
| Peter Norman Board Member | From 09/2024 to 12/2024 | 0.5 | $0 | ||
| Deirdre Parsons | Board Member | 0.5 | $0 | ||
| Vish Seshadri | Board Member | 0.5 | $0 | ||
| Susan Stewart Board Member | From 09/2024 to 12/2024 | 0.5 | $0 | ||
| Francesca Tedesco | Board Member | 0.5 | $0 | ||
| Izzy Tyszler | Board Member | 0.5 | $0 | ||
| Lauren Walrath | Board Member | 0.5 | $0 | ||
| Sonya Weigle | Board Member | 0.5 | $0 | ||
| Jill Yersak | Board Member | 0.5 | $0 |
No pay was reported for anyone in Part VII on this return.
About
- Legal name
- Rare Disease Company Coalition Inc
- EIN
- 862999172
- Address
- 200 Massachusetts Avenue Nw, Washington, DC, 20001-1429
- State
- District of Columbia
- Mission
- The mission of the rare disease company coalition is to stimulate development of and access to rare disease treatments. (as filed on the Form 990)
- Activity (NTEE)
- B01 Education
- IRS classification
- 501(c)06 (tax-exempt under section 501(c)(3) where shown)
- Classified purpose
- Education
- Size band
- 6 (IRS master file code)
- Formed
- 2021
- Principal officer
- Curt Oltmans (as named on the Form 990)
- IRS ruling date
- 1 March 2023
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 4, latest 2024
Most connected
Longest observed on the filings
≥5years on the filingsCurt Oltmans
≥5years on the filingsAmanda Malakoff
≥5years on the filingsDavelyn Hood
≥5years on the filingsDeirdre Parsons
Latest return
year to 31 December 2024iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2024. US dollars, as filed.- Total assets
- $1.4m
- Total liabilities
- $1.1m
- Net assets or fund balances
- $223k
- Contributions and grants received
- $0
- Program service revenue
- $595k
- Employees
- 0
- Volunteers
- 26
Filed finances
1 yeariTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.| Tax year | Total revenue | Total expenses | Surplus or deficit |
|---|---|---|---|
| 2024 | $595k | $954k | Deficit $358k |
As filed on the IRS Form 990. US dollars.
State registration
1 entityiBusiness-entity registers published by US states. These records are matched to this organisation by name and state, not by EIN, and are labelled as likely matches. Street addresses are not shown.Rare Disease Company Coalition Inc. likely matchiMatched by exact name and state (and ZIP where shown). State registers do not publish EINs, so this is not a confirmed match. Source: DC Department of Licensing and Consumer Protection (DLCP), corporate registrations (opendata.dc.gov). Licence: CC BY 4.0. Attribution: DC DLCP. Data last fetched 18 October 2026.
- State
- District of Columbia
- Entity type
- Domestic Nonprofit Corporation
- Status
- Active - In Good Standing
- Formed
- 5 April 2021
- Registered agent
- Yoko Rosenbaum (city and state not held)