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National Organization for Rare Disorders | NORD National Organization for Rare Disorders (NORD®) NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community
List of Rare Diseases | A-Z Database | NORD What Is the NORD ® Rare Disease Database? The NORD Rare Disease Database is an inclusive and comprehensive list of rare diseases based on information from established rare disease ontologies and it is an ongoing project made possible by a close collaboration with MONDO, Orphanet, and Online Mendelian Inheritance in Man (OMIM) The NORD Rare Disease Database includes: NORD Rare Disease Reports
Patient Assistance Programs - National Organization for Rare Disorders Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists
Centers of Excellence - National Organization for Rare Disorders NORD is committed to breaking down silos and building bridges so that people living with a rare disease can achieve their best health and well-being Our belief is that the NORD Rare Disease Centers of Excellence program is the next big stride forward for rare disease patients and care, to improve health equity and create critical new connections to resources and specialists across our nation
Financial Assistance For Patients With Rare Diseases | NORD NORD’s Rare Caregiver Respite program was an absolute lifeline for our family this past year With the respite program, I was able to select a family friend who I trusted, who was already adequately trained to handle my daughter’s needs, and I could have her provide respite whenever I needed it The reimbursement process was easy, and payment was received promptly
Clinical Trials - National Organization for Rare Disorders Find Clinical Trials Research Studies NORD shares information about opportunities to participate in clinical trials and other studies so that patients and their physicians may decide whether specific studies are appropriate for them We do not endorse or recommend participation in any specific clinical trials or studies The following is a brief sampling of current clinical trials listed at
Rare Disease News - National Organization for Rare Disorders The NORD Rare Disease Scientific Symposium brought together a dynamic community of rare disease clinicians, researchers, and thought leaders for an unforgettable gathering of ideas, insights, and inspiration
Events - National Organization for Rare Disorders NORD® Rare Disease Scientific Symposium Rare disease breakthroughs don’t happen in isolation—they require collaboration, innovation, and a united commitment to progress
COLLABORATION EDUCATION LEADERSHIP RESEARCH ADVOCACY MAJOR MILESTONES Then, a small group of patient advocates formed a coalition to unify this community and mobilize support to pass the Orphan Drug Act In 1983, the coalition became NORD, the National Organization for Rare Disorders For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies, advancing medical research, and providing patient and