The National Organization for Rare Disorders (NORD) is an established entity in the domain of rare disease studies and awareness. Nearing a remarkable milestone of 40 years, it serves the invaluable purpose of supporting patients, caregivers, clinicians as well as researchers. This diverse audience is assisted through a variety of services, which include providing detailed information about rare diseases, maintaining a database and video library on the subject, and offering a platform for the community to share inspirational stories.
In addition to being an information repository, NORD is committed to helping the individuals afflicted by rare diseases and their caregivers manage the condition better. They achieve this through a plethora of resources and programs designed to support patients and facilitate their care. This includes a dedicated helpline, patient assistance programs and the offer of exploring possible clinical trials. Particular attention is paid by NORD to ensure no one feels isolated in their challenges; 'You are not alone' ideology motivates the organization to provide community support and resources.
In a commendable effort to bolster research and improve clinical care, a variety of initiatives are undertaken by NORD. The organization encourages aspiring researchers with its membership program and prepares its members to be research-ready. It also works towards patient-focused drug development and facilitates continuing medical education. NORD's approach to achieving its mission is collaborative; it partners with national as well as global entities and maintains a strong emphasis on diversity, equity, and inclusion.
NORD also assumes a significant role in bringing together communities affected by rare diseases, by offering financial and medical assistance. It facilitates the setting up of rare disease organizations and bridges the gap between such organizations and their communities. Respectable for its commitment and contribution to make a difference, NORD has successfully become a beacon of hope, support, and knowledge in its field.
