Saturday, January 2, 2016

If You Have a Rare Chronic Condition

Affected by a very rare condition? While the various posts on this blog can be very helpful, it’s hard to find a peer group that you can participate in, let alone readily obtain information about effective treatment. The good news is that there are 30 million Americans living with a rare disease and thanks to the Internet, there are resources that can help you.

Consider the following:

Rare Genomics Institute:  Gene sequencing can provide the hope of a diagnosis, which often comes as a relief after years of traditional (and fruitless) tests, confusion and debilitating illness. Because of the cost associated with this testing, RGI has a crowdfunding website where families can solicit donations.

National Organization for Rare Disorders: A patient advocacy organization, NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Provides a wide array of information, including the NORD database of reports on various conditions. 

• Global Genes: Patient advocacy organization for those with rare diseases. Begun in 2009, there are now 500 global organizations and each year they hold a summit as well as provide news, resources etc. 

Office of Orphan Products: Mission is to advance the evaluation and development of products (drugs, biologics, devices, or medical foods) that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions. 

• NIH Genetic and Rare Diseases Information Center: provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.

• Organizations to Help Connect with Others

Rare Disease Day: The last day in February 

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