We represent the needs of the rare community and advocate on their behalf in local, national and global policy. We work with our Advocacy Committee and Policy and Advocacy Taskforce to identify issues and unite the voices of advocates within the rare patient community for policies that help those living with a rare disease and their families, and against those that have the potential to cause harm.
We partner with and support patient communities to develop collaborative research programs with research and medical communities to expand the availability of patient registries and natural history studies, advance data standards, fund research grants, and engage in Patient-Focused Drug Development initiatives.
With our network of Rare Disease Centers of Excellence and through educational partnerships, we are collaborating to improve the availability and standard of clinical care for rare disease patients, support the holistic needs of their families, and alleviate daily burdens of managing a rare disease.
The NORD Corporate Council is composed of a select group of leading companies committed to helping people with rare diseases. Membership on the Council demonstrates a commitment to the identification, diagnosis, treatment and cure of rare disorders through programs of education, advocacy, research and service
Each year, we bring rare community members together to learn, connect, share, inspire and forge life-long community connections. This patient-centric conference features content on the most critical issues including access, equity, caregiving, and medical breakthroughs.
The NORD Breakthrough Summit brings leaders from patient groups, government, industry and academia together to network, learn, and share fresh insights, expert guidance and innovative ideas.
Together we are stronger nationally.
We partner with organizations nationally and participate in consortiums toward common goals and aspirations.
Together we are stronger globally.
We partner with international organizations and consortiums to drive global progress in policy, advocacy, research and care,