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Tax Status Governance Fund Raising Financial

Name:	National Organization for Rare Disorders
Address:	55 Kenosia Avenue
	Danbury, CT 06813
Phone:	203-744-0100 800-999-6673
Web Address:	www.rarediseases.org

National Organization for Rare Disorders (NORD) meets the 20 Standards for Charity Accountability.

NORD programs and services include providing information about rare diseases in patient-friendly language; referrals to support groups and other resources, especially for newly diagnosed patients and parents or other relatives of patients; raising awareness of rare diseases among physicians and other medical professionals; advocacy on behalf of federal funding for rare disease research; advocacy for public policies to ensure that the needs of this medically under-served patient population are fairly represented; helping patient groups form organizations and mentoring to encourage best practices among patient organizations; helping connect patients with academic, government and industry researchers studying their diseases; administering patient assistance programs to provide free drug and co-pay assistance for certain medications to people who are uninsured or cannot afford their insurance co-pays; working with government agencies; administering a research program providing seed-money grants to encourage study of diseases for which there are few, or no, other sources of funding; and organizing regional and national conferences and workshops for patients and patient organizations.

For the year ended December 31, 2009, NORD's program expenses were:

Patient services	11,636,848
Education	1,356,469
Research	263,427
Technical assistance	92,413
Advocacy	84,577
Total Program Expenses:	$13,433,734

Chief Executive : Peter L. Saltonstall, President and CEO

Compensation*:

$228,906

Chair of the Board: Frank J. Sasinowski, MS, MPH, JD
Chair's Profession / Business Affiliation: Attorney, Hyman, Phelps & McNamara

Board Size: 18

Paid Staff Size: 43

*2009 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.

Method(s) Used:

Direct mail, special events, grant proposals, planned giving, and membership appeals.

Fund raising costs were 2% of related contributions. (Related contributions, which totaled $13,979,569, are donations received as a result of fund raising activities.)

NORD incurred joint costs of $354,382 for informational materials and activities that included fund raising materials. Of those costs, $313,817 was allocated to program expenses and $40,565 was allocated to fund raising expenses.

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.

The following information is based on NORD's audited financial statements for the year ended December 31, 2009.

Source of Funds
Contributions and grants	10,503,003
Indigent care drug and co-payment assistance programs	1,657,906
Contributions and bequests	785,814
Special events revenue	697,600
Investment income, including unrealized gains	345,586
Government and other grants	280,000
Royalty and other income	55,735
Sales and distribution of materials and services to the public	55,470
Membership dues	55,246
Total Income	$14,436,360

Uses of Funds as a % of Total Expenses

Programs: 94%  Fund Raising: 2%  Administrative: 4%

Total income				$14,436,360
	Program expenses			$13,433,734
	Fund raising expenses			217,775
	Administrative expenses			580,540
Total expenses				$14,232,049
Income in Excess of Expenses				204,311
Beginning net assets				14,562,011
Ending net assets				14,766,322
Total liabilities				3,005,626
Total assets				$17,771,948