Resources for Organizations

NORD Nonprofit Resource Center
Helping Build the Capacity of Rare Disease Patient Organizations

The NORD Nonprofit Resource Center is the place where patient advocates can learn the basic steps of creating an organization for the purpose of helping those afflicted by a rare disorder. Emerging leaders will find helpful tools and practical advice based upon our collective experience over the past 25 years.

While our nation remains committed to a loose patchwork of public health programs designed for common ailments, the future of orphan disease patients in America—and around the world—will be answered through highly effective patient-centered advocacy organizations. These nonprofit organizations can provide the vital link our community so desperately needs, a link that will connect patients with hope for a brighter future.

Supporting the Patient Community

The rare disease patient community is a collection of many historically orphaned populations which include people afflicted with a wide range of serious and life-threatening disorders, syndromes, diseases and conditions. An enormous amount of pain and suffering is endured by these patients. Many are uninsured or underinsured, some go years without the correct diagnosis, and most live day-to-day with a fear of what the future may hold. Improving the services and effectiveness of rare disease patient groups is a key way to begin alleviating the unique problems faced by these families.

NORD’s Nonprofit Resource Center supports the efforts of patient organizations by sharing accurate and useful information to help them create change—change that will strengthen their advocacy, expand their programs, improve their governance, and help foster strategic growth. Such meaningful change will dignify lives, giving patients, families and organizations an opportunity to thrive!

Leading Toward Success

Through our long-standing organizational membership framework, NORD has effectively engaged both new and growing patient organizations. We have coached hard-working leaders from all sectors of the orphan disease community with tremendous success. NORD has played a pivotal role in the establishment of new, growth-oriented voluntary health agencies—always promoting best practices in governance and management, innovation in patient services, and advocacy deeply rooted in integrity.

In their efforts to improve the lives of patients with serious and life-threatening rare diseases, the organizations which serve them are constantly struggling to meet the daily challenges of basic survival. However, they must do more than simply exist. These organizations need to expand their capacity to help growing numbers of patients overcome major obstacles to daily living.

NORD’s leadership in health policy, biomedical research, patient services, medical information and education, and coalition-building has become a model for patient advocacy organizations. The Nonprofit Resource Center builds upon our success as a helpful mentor and our reputation as a trusted ally. We hope to motivate patient association leaders to achieve the highest standards of American charities and create positive change in the lives of patients and their families.