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March 16, 2015

TOPIC: Uncategorized

NORD’s Paul Melmeyer Authors Piece in NCC Collaborator about State-Based Advocacy

Posted at March 3, 2015 04:04 pm by Lisa Sencen

NORD’s Assistant Director of Public Policy, Paul Melmeyer, authored this great piece (below) in the March 2015 issue of the NCC Collaborator, the monthly publication from the National Coordinating Center for the Genetic Service Collaboratives (NCC).  NCC focuses on bringing quality genetic and newborn screening services to local communities, and building bridges between public health, primary care/ Medical Home,… Read More

February 28, 2015

TOPIC: Uncategorized

Today is Rare Disease Day 2015

Posted at February 2, 2015 03:45 pm by Lisa Sencen

Rare Disease Day is here!  Celebrated on the last day of February–the rarest day on the calendar–this is the one day every year when the world comes together to improve the lives of people living with rare diseases.

NORD is proud to work with our partners as the official sponsor of Rare Disease Day in the U.S.  Here are a… Read More

February 16, 2015

TOPIC: Uncategorized

Join NORD to Celebrate Rare Disease Day

Posted at February 2, 2015 03:38 pm by Lisa Sencen
In celebration of Rare Disease Day, NORD is excited to host a special event for the rare disease community that includes a screening of the new documentary, “Banner on the Moon,” about Cindy Abbott and narrated by Valerie Harper.

Join us in D.C. for a reception and to see this inspiring story about love and determination.  Space is limited – Read More

February 16, 2015

TOPIC: Uncategorized

Advancing Research: NORD Partners with Lundbeck for 6th Raise Your Hand Campaign

Posted at February 2, 2015 03:30 pm by Lisa Sencen

For the sixth year, we’re proudly partnering with the pharmaceutical company Lundbeck on the “Raise Your Hand to Fight Rare Diseases” campaign, which supports rare disease research in celebration of Rare Disease Day.

The campaign invites individuals to visit the Rare Disease Day U.S. website,, and click on the “Raise Your Hand” icon during the month of February. Each unique click… Read More