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March 24, 2016

TOPIC: Patient Stories

Living with ALPS

Posted by Lisa Sencen

When Nicole was six months old, her mother, Laura Roublick, knew something was not right. After Nicole’s first year check-up, her doctors sent them on a long journey filled with hospital visits to find a diagnosis. Fortunately, the NYU Hospital for Cancer and Blood Disorders answered their cries for help. Nicole was diagnosed with Autoimmune Lymphoprolifertive Syndrome (ALPS), a rare… Read More

March 17, 2016

TOPIC: Press Releases, Featured News, Events

NORD Announces 2016 Rare Impact Award Recipients to be Honored on May 17

Posted by Jennifer Huron

Feat ImageContinuing its annual tradition of recognizing the people, organizations, advocates and companies who are making a difference in the fight against rare diseases, the National Organization for Rare Disorders (NORD)® announces the 2016 Rare Impact Award recipients to be honored on May 17.

In its inaugural year, the Rare… Read More

March 15, 2016

TOPIC: Press Releases, Events, Get Involved

Running for Rare Named an Official Charity Partner of the 2016 TCS New York City Marathon Set for Sunday, November 6, 2016

Posted by Jennifer Huron

running4rare_NORDRunning for Rare was named an Official Charity Partner of the 2016 TCS New York City Marathon, it was announced today by the National Organization for Rare Disorders (NORD). The race will take place on Sunday, November 6, 2016.

“Running for Rare is thrilled to partner… Read More

March 11, 2016

TOPIC: Press Releases, Events, Get Involved

Running for Rare Marathon Team Expands Under NORD

Posted by Jennifer Huron

running4rare_NORDThe Running for Rare marathon team will expand under new governance with the National Organization for Rare Disorders (NORD), the leading independent nonprofit representing all people with rare diseases and disorders. NORD will take over the program, which uses running as a platform to raise awareness and support for… Read More