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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
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
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
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
Rare Diseases Support, Resources Help | NORD Can NORD help find a medical expert for my rare disease? Many patient organizations provide lists of medical experts Search NORD’s Organizational Database to find disease-specific patient advocacy organizations NORD Rare Disease Centers of Excellence are diagnosing and treating thousands of rare disease patients
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
Sotos Syndrome - Symptoms, Causes, Treatment | NORD Learn about Sotos Syndrome, including symptoms, causes, and treatments If you or a loved one is affected by this condition, visit NORD to find resources and
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
What You Should Know About Undiagnosed Rare Diseases | NORD NORD strongly recommends discussing options to participate in research with your doctor Research can help identify new diseases, expand our understanding of known diseases, and potentially improve diagnosis and care The NORD Living Rare Study is one option that is open to individuals who are undiagnosed but suspected of having a rare disorder