NORD

@RareDiseases

National Organization for Rare Disorders () is the voice of the community. Official U.S. sponsor of

USA
Vrijeme pridruživanja: listopad 2009.

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  1. Prikvačeni tweet
    7. sij

    with NORD at Rare Disease Day: Mission 2020! This DC-based event will be held on at the family-friendly and accessible-to-all . Registration covers admission, lunch & a few surprises! 🔎 Register now:

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  2. prije 8 sati

    Great news for our partners ! A unique ICD-10 code is an important step toward improved recognition, ascertainment & research for the community. More:

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  3. prije 12 sati

    Everyone has his/her own stripes, the characteristics that make each individual distinct. While each of the 7,000+ are unique, there are many commonalities that unite patients, families & caregivers. Share your story for :

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  4. prije 12 sati

    Join NORD at the 2020 World Orphan Drug Congress USA from April 29-May 1! The World Congress is a global gathering of 1,500 attendees from 50 countries, w/ 350+ speakers & 260+ sessions covering all aspects of rare drug development & research.

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  5. prije 17 sati

    NORD is pleased to welcome and as new members. Together we are strong!

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  6. 4. velj

    . invites you to join others affected by & at the Chicago Support Group Meeting on February 15 at 1:00-4:00pm CST. Dermatologist Dr. Kyle Amber will be speaking & sharing info on these diseases. Register today:

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  7. 4. velj

    An essay by 's Peter L. Saltonstall on why corporate incentives in the Act should not be reduced or changed is featured in the Conquering issue of Congressional Quarterly Researcher. Read here (subscription required):

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  8. 4. velj

    New NORD on Thurs. 2/20 at 2:00pm: "Starting a Not-for-Profit Organization: You Can Do It, We Can Help!" Learn why and how to start a corporation from a legal expert and a NORD member patient advocacy organization. Register now:

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  9. 4. velj

    NORD is proud to unite member orgs under the Rare Coalition to push for progress by raising awareness and collaborating on issues facing the greater rare cancer community.

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  10. 3. velj

    . invites you to attend their 4th ​Annual ​SYNGAP1 ​Golf ​Classic ​& ​Silent ​Auction ​on 4/2 in Katy, TX. Your ​generous ​contribution ​will ​be ​used ​for ​life-changing ​programs ​that ​will ​benefit ​children ​with #​rare​diseases. More:

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  11. 3. velj

    Share your rare journey by participating in a quick survey! NORD is conducting a 30 year follow-up survey to better understand the barriers & facilitators of diagnosis, care & treatment in the US to compare information over time. Take it now:

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  12. 3. velj

    The Initiative has selected 30 patient groups to receive $450,000 each over two years to help advance research for . We are proud to announce that more than 50% of the selected organizations are NORD members. Read more:

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  13. 31. sij

    New blog entry - Head of the Herd w/ Mike Morris, Co-Founder & President of ! Mike's son was diagnosed w/ disorder in 2017 at 16 when whole exome sequencing identified TANGO2 deficiency as the root cause of his illness. More:

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  14. 31. sij

    Today at 5:00p.m. EST our petition closes! Lend your name to help save our nation’s newborn screening program. We need as many signatures as possible urging to restart the advisory committee. Sign now:

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  15. 31. sij

    NORD member org founder Taylor Kane will be hosting a signing of her new book, "Rare Like Us." Read more:

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  16. 30. sij

    “States have made a great deal of progress in supporting Americans living w/ . But there is still much more that needs to be done.” Read about the 5th Edition of the State of the States Report, released today by NORD & its Network:

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  17. 30. sij

    Today Sika Dunyoh, NORD Dir. of Education Programs, & Julie Raskin () spoke at the Medical Publication & Digital Communication Planning Conference () on nonprofit initiatives to provide plain language publications & digital communications

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  18. 30. sij

    Only 24 hours left to sign the petition urging to restart the advisory committee. With your help, we can resume this life-saving work. Sign now:

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  19. 30. sij

    New NORD on Thurs. 2/20 at 2:00pm: "Starting a Not-for-Profit Organization: You Can Do It, We Can Help!" Learn why and how to start a corporation from a legal expert and a NORD member patient advocacy organization. Register now:

    Poništi
  20. 30. sij

    on by sharing rare disease facts! Watch now:

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  21. 30. sij

    BREAKING NEWS: NORD joins 26 other patient orgs in opposing guidance released today on block grant funding of that will reduce access to quality and affordable health care for patients. . Read more:

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