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<\/a>NORD is a non-profit organization established in 1983 to improve the lives of individuals and families affected by rare diseases. It provides programs of advocacy, education (for patients and medical professionals), and referrals to resources.<\/p>\nNORD provides Patient Assistance Programs to help patients gain access to needed treatments. These programs, which vary from time to time, are listed on the NORD website (www.rarediseases.org<\/a>).<\/p>\n NORD administers research grants to encourage the study of rare diseases. These grants are funded largely by patients, their families, and patient organizations. View funding opportunities on the NORD website.<\/p>\n Information and Resources available through NORD:<\/p>\n Help to Access Medications:<\/p>\n Connecting with Others:<\/p>\n The next Rare Disease Day is February 28, 2017<\/p><\/div><\/li>\n Taking Action:<\/p>\n NORD Guides for Physicians:<\/p>\n NORD Also Offers Links to Information For:<\/p>\n <\/p>\n The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for\u00a0 Advancing Translational Sciences (www.ncats.nih.gov<\/a>) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). The GARD Information Center provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.<\/p>\n The NIH Undiagnosed Disease Network (UDN) is a research study funded by the National Institutes of Health Common Fund<\/a> and made up of clinical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases.<\/p>\n <\/p>\n What began as a grassroots movement in 2009, with just a few rare disease parent advocates and foundations, has since grown to over 500 global organizations. RARE Toolkits<\/a> provide individuals with usable information on a variety of topics related to living with and\/or advocating for rare disease patients. <\/p>\n The EveryLife Foundation for Rare Diseases <\/strong><\/a> is a 501(c)(3) nonprofit\u00a0dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.<\/p>\n\n
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NIH Genetic and Rare Disease Information Center<\/h3>\n
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Rare Disease Advocacy Groups<\/h3>\n
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<\/a>Global Genes<\/strong><\/a>\u00a0is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope — the\u00a0Blue Denim Genes Ribbon<\/strong><\/a>. <\/p>\n