Rare-X
- Assets
- $823.0k
- Revenue
- $1.7m
- Investments
- $0.0
- Employees
- 0
- Location
- Washington, DC
- Founding
- 09/2019
- Data as of
- 12/2021
- EIN
- 84-2298259
Organization Overview
Rare-X is located in Washington, DC. The organization was established in 2019. According to its NTEE Classification (G01) the organization is classified as: Alliances & Advocacy, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Rare-X is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2021, Rare-X generated $1.7m in total revenue. This organization has experienced exceptional growth, as over the past 2 years, it has increased revenue by an average of 27.3% each year . All expenses for the organization totaled $1.7m during the year ending 12/2021. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2021
Describe the Organization's Mission:
Part 3 - Line 1
TO ACCELERATE DIAGNOSIS, DISEASE UNDERSTANDING, AND DEVELOPMENT OF FUTURE TREATMENTS AND CURES ACROSS MORE THAN 9,500 RARE DISEASES BY ENABLING RARE PATIENT COMMUNITIES TO MORE EASILY GATHER, STRUCTURE AND SECURELY SHARE CRITICAL INCLUSIVE DATA, THROUGH A COMMON PLATFORM, IN COLLABORATION WITH RESEARCHERS, DRUG DEVELOPERS AND CLINICIANS ANYWHERE IN THE WORLD.
Describe the Organization's Program Activity:
Part 3 - Line 4a
RARE-X IS:- PILOTING A SERIES OF DEMONSTRATION PROJECTS, PARTNERING WITH RARE DISEASE COMMUNITIES, TO APPLY TECHNOLOGY PROVEN IN OTHER LARGE-SCALE PUBLIC HEALTH AND GENOMIC DATA-SHARING INITIATIVES TO SUPPORT THE GLOBAL NEEDS OF THOSE DEVELOPING TREATMENTS AND CARING FOR RARE DISEASE PATIENTS.- LEVERAGING EXISTING TECHNOLOGY POWERED BY THE BROAD INSTITUTE OF MIT AND HARVARD, WHICH WILL SUPPORT PATIENTS (IN DATA COLLECTION, STRUCTURING AND RESPONSIBLE SHARING), CLINICIANS (IN ACCELERATING DIAGNOSIS AND IMPROVING AND TRACKING HEALTH OUTCOMES), RESEARCHERS AND BIOPHARMA (WITH THE DATA THEY NEED TO IDENTIFY, DEVELOP AND TRACK THE IMPACT OF BREAKTHROUGH TREATMENTS AND CURES).- ADAPTING PROVEN TECHNOLOGIES AND PARTNERING WITH LEADING EXPERTS TO CREATE A FEDERATED DATA ANALYSIS PLATFORM, SPECIFICALLY DESIGNED BY RARE COMMUNITY LEADERS AND SCALED TO SUPPORT THE DIVERSE AND EXPANDING NEEDS OF RARE DISEASE RESEARCH, DEVELOPMENT AND CARE, AROUND THE WORLD AND IN ALL COMMUNITIES.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Nicole Boice Executive Dir. | Officer | 47 | $148,000 |
Charlene Son Rigby CEO | Officer | 40 | $50,000 |
Wendy Erler Director | Trustee | 2 | $0 |
Simon Frost Director | Trustee | 3 | $0 |
Betsy Bogard Director | Trustee | 2 | $0 |
Jason Colquitt Director | Trustee | 2 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,701,050 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,701,050 |
| Total Program Service Revenue | $0 |
| Investment income | $0 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,701,050 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $0 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $198,000 |
| Compensation of current officers, directors, key employees. | $67,624 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $0 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $0 |
| Fees for services: Management | $310,000 |
| Fees for services: Legal | $38,840 |
| Fees for services: Accounting | $19,059 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $278,512 |
| Advertising and promotion | $13,293 |
| Office expenses | $0 |
| Information technology | $447,062 |
| Royalties | $0 |
| Occupancy | $7,100 |
| Travel | $3,557 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $0 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $3,464 |
| Insurance | $647 |
| All other expenses | $946 |
| Total functional expenses | $1,681,033 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $659,432 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $150,000 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $0 |
| Net Land, buildings, and equipment | $12,520 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $1,000 |
| Total assets | $822,952 |
| Accounts payable and accrued expenses | $329,764 |
| Grants payable | $0 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $329,764 |
| Net assets without donor restrictions | $493,188 |
| Net assets with donor restrictions | $0 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $822,952 |
Grants Recieved
Over the last fiscal year, we have identified 1 grants that Rare-X has recieved totaling $118,018.
| Awarding Organization | Amount |
|---|---|
Global Genes Aliso Viejo, CA PURPOSE: General Assistance | $118,018 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Everylife Foundation For Rare Diseases Washington, DC | $4,550,600 | $5,479,237 |
Minority Aids Support Services Inc Newport News, VA | $2,781,500 | $3,058,740 |
Rare-X Washington, DC | $822,952 | $1,701,050 |
The Network Washington, DC | $1,613,836 | $1,018,617 |
Virginia Pharmaceutical Association Inc North Chesterfield, VA | $724,418 | $891,660 |
Adult Vaccine Access Coalition Washington, DC | $888,163 | $541,000 |
Fishing For Md Foundation Inc Dayton, MD | $323,603 | $452,607 |
Haystack Project Inc Washington, DC | $287,269 | $482,707 |
Eating Disorders Coalition For Research Policy And Action Inc Washington, DC | $81,996 | $225,895 |
Global Aging Institute Alexandria, VA | $16,080 | $188,335 |
Veterans Prostate Cancer Awareness Inc Washington, DC | $90,676 | $135,643 |
Bosom Buddies Charities Inc Stevensville, MD | $175,405 | $187,348 |