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Mashup Score: 0Rare Disease Day - Share Your Story - NORD (National Organization for Rare Disorders) - 1 year(s) ago
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.Alone we are rare.Together we are…
Categories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 0Congress’ Year-End Legislative Package Delivers for the Rare Community - NORD (National Organization for Rare Disorders) - 1 year(s) ago
As part of H.R. 2617, Congress today delivered several crucial programs and reforms that are important to the rare disease community — measures that NORD and the rare community fought Read more >
Categories: Latest Headlines, Rare DiseaseTweet-
Congress today delivered several crucial programs and reforms for the #RareDisease community in its year-end legislative package. Read NORD’s statement about what’s included and how it impacts you: https://t.co/qPN8OCnYfG
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Mashup Score: 0Store - NORD (National Organization for Rare Disorders) - 1 year(s) ago
Copyright ©2021 NORD – National Organization for Rare Disorders, Inc. All rights reserved. NORD is a registered 501(c)(3) charity organization. Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical…
Categories: Latest Headlines, Rare DiseaseTweet-
#RareDiseaseDay is coming up on February 28, 2023. Join us in preparing to #ShowYourStripes with an item from NORD’s Rare Disease Day store! https://t.co/jDpwOARDlw https://t.co/YyoPdvziBv
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Mashup Score: 3
Stiff Person SyndromeNORD gratefully acknowledges Scott D. Newsome, DO, FAAN, Associate Professor of Neurology, Director of Stiff Person Syndrome Center, Johns Hopkins School of Medicine, for assistance in the preparation of this report. Synonyms of Stiff Person SyndromeMoersch-Woltman syndromestiff-man syndromeSMSSPS Subdivisions of Stiff Person Syndromeclassic stiff person syndromefocal stiff…
Categories: Latest Headlines, Rare DiseaseTweet-
Yesterday, Celine Dion shared her stiff-person syndrome diagnosis with the world. To learn more about this #RareDisease, check out NORD's rare disease database (https://t.co/0Afcx9blm4) along with the many resources from one of our member organizations, @TheSPSRF. #SPS https://t.co/9uM2ZkkZrZ
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Mashup Score: 0Newsletters - NORD (National Organization for Rare Disorders) - 1 year(s) ago
Learn about events of significance to the rare disease community, funding opportunities, resources for health care providers, and other news, from the free monthly NORD eNews. Join NORD’s other lists Read more >
Categories: Latest Headlines, Rare DiseaseTweet-
Are you interested in staying up to date on all things NORD and #RareDiseases? Subscribe to our newsletter today: https://t.co/yDfg0aRAdY https://t.co/N8JllnCoWt
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Mashup Score: 4Take Action - NORD (National Organization for Rare Disorders) - 1 year(s) ago
Copyright ©2021 NORD – National Organization for Rare Disorders, Inc. All rights reserved. NORD is a registered 501(c)(3) charity organization. Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical…
Categories: Latest Headlines, Rare DiseaseTweet-
TAKE ACTION: If the Medical Nutrition Equity Act (MNEA) doesn't pass before the 117th Congress ends, we'll have to start from scratch in January. Help get MNEA over the finish line for those in the #RareDiesease community who are affected: https://t.co/s8ZxS6G5EA #MNEAFinishLine https://t.co/MHKkrEbvoQ
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Mashup Score: 1
My journey with cholangiocarcinoma (also known as bile duct cancer) began when my mom was diagnosed with the same rare cancer and passed away in 2011. In 2018, I was Read more >
Categories: Latest Headlines, Rare DiseaseTweet-
In today's #CommunityStory, Jan shares her journey with cholangiocarcinoma and raising awareness by bringing the community together. Read more of Jan's story here on our blog: https://t.co/bwVePXEBtG https://t.co/GvlO13fg9j
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Mashup Score: 2Highlights from #NORDSummit Session: Mental Health and Rare Cancers - NORD (National Organization for Rare Disorders) - 1 year(s) ago
One of the most popular sessions at NORD’s 2022 Rare Disease and Orphan Products Breakthrough Summit was the session, “Mental Health and Rare Cancers.” Attendees had the opportunity to gain Read more >
Categories: Latest Headlines, Rare DiseaseTweet-
One of the most popular sessions at the 2022 #NORDSummit was, “Mental Health & #RareCancers.” This session allowed attendees the opportunity to gain insights on supporting patients & families struggling with mental health issues. Read more: https://t.co/AgBhbmtIeP https://t.co/pC4NBsZtra
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Mashup Score: 1
Your browser does not support the video tag.It’s a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally!The National Organization for Rare Disorders (NORD) is proud to be the official US partner for Rare Disease Day. We work with our sister organization EURORDIS (Rare Diseases – Europe) and others all around the world to drive an international…
Categories: Latest Headlines, Rare DiseaseTweet-
#RareDiseaseDay is on Feb. 28, 2023, just 100 days away! Join NORD for a webinar on Wed., 11/30, to learn about opportunities to support the #RareDisease community for Feb. 28. We look forward to exploring the ways you can #ShowYourStripes! @eurordis https://t.co/cBSgfqXKFW https://t.co/TWWKmHItUU
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Mashup Score: 0
At NORD, you can make a difference.The National Organization for Rare Disorders (NORD) is the leading nonprofit organization representing the 30 million Americans who have rare diseases and those seeking to improve their lives. Since 1983, we’ve served as the voice of the rare disease patient community, providing advocacy for fair and enlightened public policies; education for patients, their…
Categories: Latest Headlines, Rare DiseaseTweet-
We are hiring! Join the NORD team and make a difference for the #raredisease community. https://t.co/FpYonFLqgl
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Do you or a loved one have a #RareDisease diagnosis? Share your story with NORD today for the opportunity to be featured in our upcoming campaign for #RareDiseaseDay, which is February 28: https://t.co/laAKCtUP8w https://t.co/EiPsqJhA7f