“The USA joined Rare Disease Day in 2009 with participation from NORD, the National Organization for Rare Disorders, making the campaign a truly international affair. Diverse events and campaigns have been organized since then, including a collection of photographs with the Rare Disease logo across the USA, “Handprints across America”, and educational programs in schools. In 2013 President Barack Obama sent a letter proclaiming his support of the day.

NORD, the National Organization for Rare Disorders, is committed to the identification, treatment, and cure of rare diseases through programs of education, advocacy, research and patient services.  They can be contacted directly to help you find a patient organization locally which may have more information about a specific rare disease or disorder. Find their contact information on the bottom of this page.”

Paraneoplstic syndromes are RARE DISEASES!  Help support this important day to try to provide more recognition leading to more research on rare diseases.

***Go to my article about paraneoplastic syndrome:




About mcreyscope

Retired / disabled survivor of Stage IV melanoma and paraneoplastic syndrome. Now in a fight with terminal treatment resistant Stage IV Prostate Cancer.
This entry was posted in Chronic Pain and Chronic Illness, Paraneoplastic Syndrome and tagged , , , , , , , , , , , , . Bookmark the permalink.

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