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Mashup Score: 6
Patients and families coping with undiagnosed rare medical conditions may experience unique challenges in accessing appropriate medical care and social support. Undiagnosed patients include those who are “not yet diagnosed” because they have not been referred to the appropriate medical specialist as well as patients who have a condition not previously described and for which Read more >
Categories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 2Store - NORD (National Organization for Rare Disorders) - 2 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-
Through NORD's #Running4Rare, runners join community partners to raise awareness for #RareDiseases while fundraising to contribute to NORD programs for #undiagnosed patients. Show off your excitement and check out the NORD store today: https://t.co/dDKNYo1kKk https://t.co/PbJ24BTZsL
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Mashup Score: 2Store - NORD (National Organization for Rare Disorders) - 3 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-
Through NORD's #Running4Rare, runners join community partners to raise awareness for #RareDiseases while fundraising to contribute to NORD programs for #undiagnosed patients. Show off your excitement and check out the NORD store today: https://t.co/dDKNYo1kKk https://t.co/RkN44BAuIF
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Mashup Score: 2Ray Stevens’ Rare Disease Reflections from 22,000 Feet - NORD (National Organization for Rare Disorders) - 3 year(s) ago
Ray Stevens, rare disease researcher, advocate, and adventure seeker, has concluded his Himalayas and Mount Everest trek to rare awareness for NORD and our community. Ray made it just past 22,000 feet of elevation, which marks camp two of four before reaching the mountain’s summit. According to Ray, climbing Everest was an amazing lesson about how hard it is to live without enough oxygen. While…
Categories: Latest Headlines, Rare DiseaseTweet-
Ray Stevens, researcher & #advocate, took rare & #undiagnosed disease awareness to 22,000 ft! Of his journey, he says, "This experience has only increased my passion to create the next gen of medicines to help combat #pulmonary & #RareDiseases." Read more: https://t.co/K1yy7wGDo0 https://t.co/lhDpIvECym
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Mashup Score: 17
Patients and families coping with undiagnosed rare medical conditions may experience unique challenges in accessing appropriate medical care and social support. Undiagnosed patients include those who are “not yet diagnosed” because they have not been referred to the appropriate medical specialist as well as patients who have a condition not previously described and for which Read more >
Categories: Latest Headlines, Rare DiseaseTweet-
Today is #UndiagnosedChildrensDay. NORD is proud to support @UDNIss in raising awareness for the #undiagnosed and undiagnosed #RareDisease community. For those seeking resources and information, please visit NORD's website at: https://t.co/HJxU6YQXYV #UDNI #UDNICommunity https://t.co/Lqwz6JT3mN
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Mashup Score: 39
Patients and families coping with undiagnosed rare medical conditions may experience unique challenges in accessing appropriate medical care and social support. Undiagnosed patients include those who are “not yet diagnosed” because they have not been referred to the appropriate medical specialist as well as patients who have a condition not previously described and for which Read more >
Categories: Latest Headlines, Rare DiseaseTweet-
Today is #UndiagnosedDay. NORD is proud to share resources to support #undiagnosed patients throughout their journey in hopes that they can find a correct diagnosis sooner. View our registry and resources on the NORD website: https://t.co/HJxU6YQXYV https://t.co/wWON4hBVFK
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Mashup Score: 2
2021 Agenda at a glance Please complete this form for a current download edition.
Categories: Latest Headlines, Rare DiseaseTweet-
Have you registered for the #LivingRareForum yet? This interactive program includes a full agenda of virtual breakout rooms covering the most in-demand #RareDisease, #undiagnosed & #caregiver topics. View the full agenda: https://t.co/IqFfFTxEtp (Scholarships are still available) https://t.co/24BR1mwnvg
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Mashup Score: 4
2021 Agenda at a glance Please complete this form for a current download edition.
Categories: Latest Headlines, Rare DiseaseTweet-
Have you registered for the #LivingRareForum yet? This interactive program includes a full agenda of virtual breakout rooms covering the most in-demand #RareDisease, #undiagnosed & #caregiver topics. View the full agenda: https://t.co/IqFfFTxEtp (Scholarships are still available) https://t.co/dcrUqzWsgM
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Mashup Score: 0
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The Undiagnosed diseases network international (UDNI) was established in 2014, (UDNI); it was founded by five participants countries including Italy.
Read the original tweet here
Source: TwitterCategories: Latest Headlines, Rare DiseaseTweet-
NORD met with global #undiagnosed patient advocates from the US, Cypress, Sweden, Netherlands and Spain as part of the @UDNIss Patient Engagement Group. Follow the Undiagnosed Diseases Network International (UDNI) on Twitter: https://t.co/OKcp9hSo4f
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Mashup Score: 1Running for Rare - 4 year(s) ago
Alone we are rare. Together we are strong.(R)
Source: Rare Action NetworkCategories: Latest Headlines, Rare DiseaseTweet-
Interested in learning more about #NORD's signature charity running program-#Running4Rare? Runners are paired with rare community members to raise awareness for #rarediseases while fundraising to support #undiagnosed patients. More: https://t.co/NETGqZnqYB https://t.co/noslfdI6rI
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#RDDChat22 A2: If you are an #undiagnosed rare patient, check out these resources and potential next steps on NORD’s website: https://t.co/HJxU6YQXYV