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Mashup Score: 23
NORD invites you to share your story. Join the individuals and families who have contributed their personal accounts of living with rare diseases. Alone we are rare. Together we are
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 3Quintissa's Rare Disease Story in Honor of World Blood Donor Day - National Organization for Rare Disorders - 1 year(s) ago
By Quintissa P.
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
Here's another favorite story from this year, by sickle cell advocate Quintissa all about the importance of access to blood transfusions for sickle cell patients! https://t.co/w3Rutqe1c7
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Mashup Score: 7Store - National Organization for Rare Disorders - 1 year(s) ago
Copyright ©2023 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…
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
Want to spread awareness for the #RareDisease community all year long? Check out the NORD store to order an ornament, sweatshirt, tote bag, or more in time for the holiday season: https://t.co/HgMP6KwovU https://t.co/lo39huPUCI
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Mashup Score: 23Volunteer Spotlight: How Judy Advocated for Better Access to Care for Rare Hawaii Residents - National Organization for Rare Disorders - 1 year(s) ago
This year, NORD Advocate Judy A. testified before the Hawaii state legislature, leading Hawaii to pass a law making it easier for residents with rare diseases
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
For #NationalPatientAdvocacyDay, read about Judy, a rare disease advocate in Hawaii with #IgANephropathy. Judy's testimony before the #Hawaii legislature helped pass a law making it easier for residents with #RareDiseases to access out-of-state care: https://t.co/Izn2SUnJ3h https://t.co/hYiD94THVR
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Mashup Score: 43NORD Launches Education Series to Advance Patient Involvement in Rare Disease Drug Development - National Organization for Rare Disorders - 1 year(s) ago
Today, the National Organization for Rare Disorders (NORD) launched a new education series in English and Spanish titled, “Rare Disease Drug Development: What
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
NEW: At today's #NORDSummit, we're proud to announce a new education series in partnership with @US_FDA and @CPathInstitute designed to help patients and advocates understand their role as drivers of the #RareDisease drug development process. Learn more: https://t.co/8j3qHGJSd7 https://t.co/DDRTcvubIz
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Mashup Score: 1Store - National Organization for Rare Disorders - 1 year(s) ago
Copyright ©2023 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…
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
This holiday season, treat yourself or your loved ones to an item from the NORD store! 👕🛍️ From sweatshirts to ornaments to water bottles, purchase whichever item is catching your eye: https://t.co/CZKr4fvgvL https://t.co/zknaFT36j2
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Mashup Score: 6NORD Member List - National Organization for Rare Disorders - 2 year(s) ago
Since our inception in 1983, NORD has maintained the highest level of transparency in how we are structured and how we represent the rare disease community. Our reputation for leading with integrity – and with an unbiased patient voice – has been developed over three decades of meaningful action on behalf of individuals affected by rare disease. NORD is known and respected on Capitol Hill and…
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
NORD welcomes our new Member Organization, the @ddx3x Foundation! The #DDX3X Foundation connects families, resources, and the medical community to advance research for a cure to this rare genetic disorder, #DDX3Xsyndrome. Learn more about NORD's members: https://t.co/csDlnhbVRM https://t.co/X0ObVbel2Q
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Mashup Score: 5NORD Member List - National Organization for Rare Disorders - 2 year(s) ago
Since our inception in 1983, NORD has maintained the highest level of transparency in how we are structured and how we represent the rare disease community. Our reputation for leading with integrity – and with an unbiased patient voice – has been developed over three decades of meaningful action on behalf of individuals affected by rare disease. NORD is known and respected on Capitol Hill and…
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
NORD welcomes our new Member Organization, the @ddx3x Foundation! The #DDX3X Foundation connects families, resources, and the medical community to advance research for a cure to this rare genetic disorder, #DDX3Xsyndrome. Learn more about NORD's members: https://t.co/csDlnhbVRM https://t.co/X0ObVbel2Q
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Mashup Score: 280IAMRARE® Program - National Organization for Rare Disorders - 2 year(s) ago
Small patient populations; Hard to diagnose or delayed diagnosis due to lack of education and understanding among medical professionals; Poor understanding of the natural history of the disease and its progression without intervention; No prior pathways to follow; clinical endpoints that are often unclear; and Enrollment and retention challenges. To address the special needs of those developing treatments for rare diseases, NORD has created a natural histories patient registry platform as part of the
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
Announcing @CSRFnet as one of the newest patient organizations to join our IAMRARE® community! CSRF has supported patients, partnered with doctors & researchers, and campaigned on behalf of the #Cushings community for almost 30 years. Learn about IAMRARE: https://t.co/fJ8yT5Yt04 https://t.co/GeidehPGei
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Mashup Score: 5NORD Member List - National Organization for Rare Disorders - 2 year(s) ago
Since our inception in 1983, NORD has maintained the highest level of transparency in how we are structured and how we represent the rare disease community. Our reputation for leading with integrity – and with an unbiased patient voice – has been developed over three decades of meaningful action on behalf of individuals affected by rare disease. NORD is known and respected on Capitol Hill and…
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
NORD welcomes our new Member Organization, the @ddx3x Foundation! The #DDX3X Foundation connects families, resources, and the medical community to advance research for a cure to this rare genetic disorder, #DDX3Xsyndrome. Learn more about NORD's members: https://t.co/csDlnhbVRM https://t.co/X0ObVbel2Q
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#RareDiseaseDay is coming up next month on February 29, an especially rare day because of the leap year! 🦓💙 As always, we will share stories from our community leading up to and on the day of the celebration. Share your #RareDisease story with us here: https://t.co/laAKCtUP8w https://t.co/mVvDi8lRx5