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NORD Headquarters

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55 Kenosia Ave.
Danbury, CT 06810 United States

January 2016

NORD Registry Natural History Studies Webinar

January 7, 2016 @ 1:00 pm - 2:00 pm
NORD Headquarters, 55 Kenosia Ave.
Danbury, CT 06810 United States

An online seminar providing an overview of the NORD Natural History Studies project and a short demonstration of the platform. Register here.

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NORD Registry Natural History Studies Webinar

January 20, 2016 @ 1:00 pm - 2:00 pm
NORD Headquarters, 55 Kenosia Ave.
Danbury, CT 06810 United States
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An online seminar providing an overview of the NORD Natural History Studies project and a short demonstration of the platform. Register here.

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Advocacy 101 Webinar

January 28, 2016 @ 3:00 pm - 4:00 pm
NORD Headquarters, 55 Kenosia Ave.
Danbury, CT 06810 United States
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Join us for Advocacy 101 webinar. This webinar will review basic information on how to be a successful advocate when meeting with elected officals. Anyone interested in participating in Rare Disease Day state house events are encouraged to attend this webinar. Pre-Registration is required.

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Natural History Study Registries Applications Due

January 29, 2016 @ 8:00 am
NORD Headquarters, 55 Kenosia Ave.
Danbury, CT 06810 United States
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Applications are due for patient organizations to apply for the development of a patient registry for their patient community.   Please visit our website here for more information about this exciting opportunity. If you have any questions about this program, please contact Jacqueline Kraska at [email protected]org.  

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February 2016

Due Date: Boston Marathon Running for Rare Team Application

February 1, 2016
NORD Headquarters, 55 Kenosia Ave.
Danbury, CT 06810 United States
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The Boston Marathon Team is looking for qualified runners or runners with waivers to join our charity team.  To apply, please contact the Running for Rare Diseases Team Committee by February 1st ([email protected])

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Nomination Deadline for Rare Impact Awards

February 1, 2016 @ 8:00 am
NORD Headquarters, 55 Kenosia Ave.
Danbury, CT 06810 United States
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For more than 25 years, NORD has hosted an annual celebration to honor the year’s top achievements in rare diseases. In 2016, we are expanding the program and want to hear from you about the difference makers.   They are patients, caregivers, advocates, doctors, researchers, legislators, regulators, and public figures. Individuals who make a positive impact on the rare disease community go above and beyond, overcoming certain obstacles, to make meaningful change in the lvies of others. They are making…

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Due Date: Providence Marathon and Half Marathon Running for Rare Team Application

February 29, 2016
NORD Headquarters, 55 Kenosia Ave.
Danbury, CT 06810 United States
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Applications for the Providence Marathon and Half Marathon Running for Rare Team are due by February 29th. Please apply here. 

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September 2016

Tweetchat on Pediatric Cancers, #KidsCancerChat

September 21, 2016 @ 1:00 pm - 2:00 pm
NORD Headquarters, 55 Kenosia Ave.
Danbury, CT 06810 United States
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September is Pediatric Cancer Awareness Month. Did you know that all pediatric cancers are rare? Tweetchat Coordinates When: Wednesday, Sept. 21, 1:00 p.m. ET Tweetchat Hashtag: #KidsCancerChat Tweetchat Moderator from NORD: @RareDiseases Tweetchat Co-Host from Texas Childrens: @TexasChildrens Featured Guests: @CureSarcoma,@NFNetwork, @RareCancerRF & @MPN_RF As part of NORD's mission to help people affected by rare diseases - more than half of whom are children - we are honored to co-host this tweetchat with Texas Children's Hospital, ranked by U.S News and World Report as one of the top…

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July 2017

Tweetchat on Genetic Testing, #genetest101

July 13, 2017 @ 2:00 pm - 3:00 pm
NORD Headquarters, 55 Kenosia Ave.
Danbury, CT 06810 United States
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Tweetchat Coordinates When: Thursday, July 13, 2:00 p.m. - 3:00 p.m. ET Tweetchat Hashtag: #genetest101 Tweetchat Moderator from NORD: @RareDiseases Tweetchat Co-Host from Texas Childrens: @TexasChildrens As part of NORD's mission to help people affected by rare diseases - more than half of whom are children - we are honored to co-host this tweetchat with the Rare Disease Institute at Children's National Health System This is an opportunity for our entire community—patients, families, physicians, researchers, advocates, and others—to come together, learn from one another,…

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