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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