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

3,519 Following   33,602 Followers   14,239 Tweets

Joined Twitter 10/29/09


Have you used #telehealth to receive care during #COVID19? NORD wants to hear from you! Share your experience here: https://t.co/r8dXYZlXI1.@SCDAAorg is recruiting mentees for its Peer-to-Peer Mentoring Program. Learn more and contact us today! More: https://t.co/AkHQVI6K0z
7/8
2020
New #webinar: "Building a Village: How to Re-Engage Your Board Members, Leaders and Volunteers" on Wednesday, July… https://t.co/Bvrss5eV7KJoin us in the 7000 Mile Challenge to support the #RareDiseaseCommunity that needs our help now more than ever!… https://t.co/6ff53dSJHq
Retweeted by NORDJoin @SoftBonesHPP for expert-led education sessions, activities & opportunities to connect with others in the… https://t.co/HaRRim0063In today's @nytimes, four brave families impacted by #raredisease are profiled in a piece that covers how they had… https://t.co/3sONCr4NfoThe National Organization for Rare Disorders (NORD®️) has partnered with Osmosis on many exciting projects, but jus… https://t.co/ynfRvXYi1s
Retweeted by NORD
7/7
2020
The @vhlalliance International Medical/Research Symposium is going VIRTUAL October 29-31! For more information and… https://t.co/c90K9ev61fHave you used #telehealth to receive care during #COVID19? NORD wants to hear from you! Share your experience here: https://t.co/r8dXYZlXI1
7/6
2020
Don't miss your chance to join us for the 2020 #LivingRareForum! This inspiring and educational weekend will bring… https://t.co/vghDcwKbIA
7/4
2020
.@aamdsif - Patients are driving new and better treatments for bone marrow failure disease. Join them and learn mor… https://t.co/kPKGiF3nmqNew #webinar: "Building a Village: How to Re-Engage Your Board Members, Leaders and Volunteers" on Wednesday, July… https://t.co/WYzsum9leY
7/3
2020
Check out resources from @ae_society #StrongerTogether during #COVID19. Informative visuals for prevention, self-ca… https://t.co/OEeg5vl4k5NORD Seed Grants for member organizations are now available! We are committed to supporting these orgs through capa… https://t.co/JilMuhBTwP
7/2
2020
#PAP community, @PAP_Foundation needs your help! Patients & caregivers, please fill out this patient experience sur… https://t.co/hrZkqce6fUNew #webinar: "Building a Village: How to Re-Engage Your Board Members, Leaders and Volunteers" on Wednesday, July… https://t.co/yIqWTbyeWg
7/1
2020
Global DARE Foundation is hosting a webinar series on #RefsumDisease. Join us on July 1 to learn from Ronald JA Wan… https://t.co/ZOmCyR1TS9Don't miss your chance to join us for the 2020 #LivingRareForum! This inspiring and educational weekend will bring… https://t.co/OG49DDwjeCNORD (@RareDiseases) wants to hear about your #raredisease experience with telehealth during #COVID19. Share yours… https://t.co/eT2Dy4323c
Retweeted by NORDThe third episode of the ABCs of NMOSD podcast series, "Am I Having a Relapse?," took place last week. Listen and r… https://t.co/E11gRYdz3jNORD Seed Grants for member organizations are now available! We are committed to supporting these orgs through capa… https://t.co/c6HPSEzOnu
6/30
2020
@LifeAccrdingLiz Yes! One of the great things about moving to the virtual platform is that it allows for on-demand… https://t.co/Yr3wEFqmnRJoin @PHAssociation for a virtual town hall that equips you with insight on how to prepare your medications, suppli… https://t.co/h2d6SK68ri.@PAP_Foundation - FDA is hosting a private, confidential conference call where a small group of people affected by… https://t.co/eUMsGDbKg3New #webinar: "Building a Village: How to Re-Engage Your Board Members, Leaders and Volunteers" on Wednesday, July… https://t.co/B3jkaFW6yu.@NORDpodcast: The #VoiceOfRare Disease is releasing our first episode when we reach 10,000 listens on our "Welcome… https://t.co/flOgqJ6my9
6/29
2020
.@NORDpodcast: The #VoiceOfRare Disease is releasing our first episode when we reach 10,000 listens on our "Welcome… https://t.co/gi222FF8wu
6/27
2020
New #webinar: "Building a Village: How to Re-Engage Your Board Members, Leaders and Volunteers" on Wednesday, July… https://t.co/Jf1oRJ9E6aDon't miss your chance to join us for the 2020 #LivingRareForum! This inspiring and educational weekend will bring… https://t.co/Et3yIePZQ9NORD is deeply concerned about the #PromisingPathwayAct that was recently introduced in both the Senate and the Hou… https://t.co/fTe5YCiQlUNORD Seed Grants for member organizations are now available! We are committed to supporting these orgs through capa… https://t.co/xoG7y3HSkk.@PHAssociation - Súmese a la videoconferencia sobre cómo elaborar un plan de emergencia por HP el viernes 26 de ju… https://t.co/uKj8sUSuHa @Maxs_Milestones believes in the power of patient advocacy to connect industry, academia and patients. Read how Amb… https://t.co/xD7Oj9ZxtRWant to stay informed on everything NORD is accomplishing? Sign up to receive #NORD news and see how we are working… https://t.co/cJstP8J2m9
6/26
2020
.@NORDpodcast: The #VoiceOfRare Disease is releasing our first episode when we reach 10,000 listens on our "Welcome… https://t.co/qKJkdWSbKJWhat do you do when your #rarecancer "doesn't even exist?" Out of Patients from @OffScripMedia features @cure_sara,… https://t.co/RGKHVTbuY0Have you listened to @NORDpodcast: The #VoiceOfRare Disease yet? The teaser trailer is live and episodes are coming… https://t.co/xEcdKHWnDCIt’s time for Medicaid expansion for Missouri through #YesOn2. Thank you for the endorsement, National Organization… https://t.co/y0WyRG523H
Retweeted by NORDThe @UsherCoalition invites the global #UsherSyndromeCommunity to join USH Connections Week, an interactive virtual… https://t.co/UfdQGluNde
6/25
2020
#NORD is extending support to those impacted by #COVID19. By sharing resources on how to be prepared and seek prope… https://t.co/oK8IA3BZYMNORD Seed Grants for member organizations are now available! We are committed to supporting these orgs through capa… https://t.co/rRJiy4VFaJNORD, NORD's Rare Cancer Coalition and the @US_FDA Oncology Center of Excellence hosted a listening session on how… https://t.co/Iz9axiujRXLearning about autoimmune encephalitis has never been easier or more fun with #AETrivia playing cards! 52 of the mo… https://t.co/KMW8cSsSBgNew #webinar: "Crisis Communications: COVID-19 and the Future" on Thursday, June 25 at 2:00 PM ET. Join #NORD and M… https://t.co/v9liBMShB4Interested in learning more about #NORD's signature charity running program-#Running4Rare? Runners are paired with… https://t.co/vlRNuJFplE
6/24
2020
Join #NORD, @CPathInstitute, @US_FDA and @TakedaPharma tomorrow, June 24 at 2:00 PM ET for “Shortening the Timeline… https://t.co/20uGK0HSHDNEW SURVEY OPEN: NORD is conducting a follow-up survey to assess the continued impact of #COVID19 on #raredisease p… https://t.co/IUuce5IezeThe 2020 Virtual @SSADHORG Conference on July 9 –10, 2020 will include presentations by leading clinicians and rese… https://t.co/zzD0N1LCikNew #webinar: "Building a Village: How to Re-Engage Your Board Members, Leaders and Volunteers" on Wednesday, July… https://t.co/amWX7XLylnJoin #CPath @RareDiseases @US_FDA June 24, 2 p.m. ET for “Shortening the Timeline for Developing New Treatments – H… https://t.co/4GRs4JM4rZ
Retweeted by NORDHave you listened to @NORDpodcast: The #VoiceOfRare Disease yet? The teaser trailer is live and episodes are coming… https://t.co/29bHIwp0Yx
6/23
2020
Medical professionals and researchers will unite at @vhlalliance's International Medical/Research Symposium on Octo… https://t.co/SZnKUX5yKRThe National Organization for Rare Disorders (NORD) is pleased to announce new funding opportunities through the Ja… https://t.co/eoX7c6BjbN#NORDintheNews: On June 20, a Motley Fool article on choosing nonprofits worthy of donations spotlighted #NORD, alo… https://t.co/NX4LESR7suNEW SURVEY OPEN: NORD is conducting a follow-up survey to assess the continued impact of #COVID19 on #raredisease p… https://t.co/BA3S9v4y5bThe newest addition to the #NORD Rare Disease Video Library is a set of 4 videos on genome editing, a promising app… https://t.co/1DxsGY2irA.@NORDpodcast: The #VoiceOfRare Disease is releasing our first episode when we reach 10,000 listens on our "Welcome… https://t.co/gdp2MWwrBm
6/22
2020
NORD Seed Grants for member organizations are now available! We are committed to supporting these orgs through capa… https://t.co/koXBe8xlYwNEW SURVEY OPEN: NORD is conducting a follow-up survey to assess the continued impact of #COVID19 on #raredisease p… https://t.co/5jCjZDgHxs
6/21
2020
NEW SURVEY OPEN: NORD is conducting a follow-up survey to assess the continued impact of #COVID19 on #raredisease p… https://t.co/cVaBr8REeH.@NORDpodcast: The #VoiceOfRare Disease is releasing our first episode when we reach 10,000 listens on our "Welcome… https://t.co/iOwrTogkRhHave you listened to @NORDpodcast: The #VoiceOfRare Disease yet? The teaser trailer is live and episodes are coming… https://t.co/Tc7NFnObhd
6/20
2020
In honor of Father's Day, two anonymous donors are giving away complimentary registration to NORD's… https://t.co/mQSpggDA8AThe @AlphaFriend is excited to launch registration for their first Virtual Alpha-1 National Conference #A1NC20. Thi… https://t.co/3OxJHyzRIDNEW SURVEY OPEN: NORD is conducting a follow-up survey to assess the continued impact of #COVID19 on #raredisease p… https://t.co/QBEUFt0lavNew #webinar: "Crisis Communications: COVID-19 and the Future" on Thursday, June 25 at 2:00 PM ET. Join #NORD and M… https://t.co/x2VzInbzZkNORD Seed Grants for member organizations are now available! We are committed to supporting these orgs through capa… https://t.co/5xwMO54iSeWe're only 1 month away from the #LivingRareForum! We can't wait to connect with you online. Register today:… https://t.co/zBdVMUDLjLNew blog entry - #HeadOfTheHerd with Beverley Francis-Gibson, President and Chief Executive Officer, @SCDAAorg! Bev… https://t.co/maeQdx3oVj
6/19
2020
NEW SURVEY OPEN: NORD is conducting a follow-up survey to assess the continued impact of #COVID19 on #raredisease p… https://t.co/B7HZoBgtiBThroughout #COVID19, @CurePSP will remain committed to offering as many opportunities to connect w/ others who are… https://t.co/8Wg130hRaXNORD Asks a #RareDisease Expert: I have a child with #KawasakiDisease. Do they have a higher risk to develop #MISC?… https://t.co/yhRgeAIKD0NORD Asks a #RareDisease Expert: What is the International #PICU-#COVID19 Collaboration & how is this group contrib… https://t.co/qjzvcy5RmrNew #webinar: "Building a Village: How to Re-Engage Your Board Members, Leaders and Volunteers" on Wednesday, July… https://t.co/ERw2Bn5CXPNORD Asks a #RareDisease Expert: What should parents do if they suspect their child might have #MISC? More:… https://t.co/CpiJ3xn1p8NORD Asks a #RareDisease Expert: What is Multisystem Inflammatory Syndrome in Children (#MISC) associated w/… https://t.co/jZC9JmTzlKNew #CME for clinicians available on #hemophiliaA: Optimizing Prophylaxis Strategies of Hemophilia A With or Withou… https://t.co/Pfr3DyrD1D
6/18
2020
Have you listened to @NORDpodcast: The #VoiceOfRare Disease yet? The teaser trailer is live and episodes are coming… https://t.co/HjcnQIRZNZBeing a #raredisease caregiver is tough, especially during #COVID19. For #MentalHealthMonth, @PRISMS_SMS is sharing… https://t.co/MCH0UWb81nDiscrimination has NO place in healthcare. HHS's new final rule weakens important patient protections & makes it mo… https://t.co/hjN8ET0UR8Will you be logging on with us for the #LivingRareForum? It's only 4 weeks away - make sure to order your zebra goo… https://t.co/fLkU3VHzQDDrive #undiagnosed research forward! Enroll in the #NORD Undiagnosed Rare Disease Registry: https://t.co/dbQIciAnD5 #medicalmysteryNew #CME for clinicians available on #hemophiliaA: Optimizing Prophylaxis Strategies of Hemophilia A With or Withou… https://t.co/xDgvP0wvFHThank you for your ongoing support @AlexionPharma! https://t.co/cCicj3DjDyWe are excited to announce the launch of the RARE Youth Revolution movement, along with its new online home… https://t.co/tV2yiULULr
Retweeted by NORD
6/17
2020
Join @SmithKingsmore for "Seizures Are Scary", their June FB Live Event on Epilepsy on Thursday, June 18th at 8:00p… https://t.co/ljn2tv1aQr @Flippymomof3 Check us out at @NORDpodcast! 🎧.@grin2bsyndrome is pleased to announce the availability of their seed grant program to support patient-oriented re… https://t.co/x27KCjMOPONew #CME for clinicians available on #hemophiliaA: Optimizing Prophylaxis Strategies of Hemophilia A With or Withou… https://t.co/CMu4ZTPdPh.@CureCastleman team of 30+ volunteers reviewed 4500+ papers & extracted data on 11k+ patients to find 150+ repurpo… https://t.co/88qUZqaX8cNew #webinar: "Crisis Communications: COVID-19 and the Future" on Thursday, June 25 at 2:00 PM ET. Join #NORD and M… https://t.co/fmgHJudTGc
6/16
2020
.@mitoaction & the Organic Acidemia Association (OAA) are co-hosting the 2020 International Metabolic Conference fr… https://t.co/XJ6SWmmWG3Did you miss the live tweetchat: Ending #Isolation: Tips for Connecting & Resources for Support? Register for the… https://t.co/HxnCf4UJCKToday, Vanessa Boulanger, Dir of #Research Programs at NORD will be a panelist along w/ reps from @CPathInstitute,… https://t.co/qtmLYAuGyGNew #CME for clinicians available on #hemophiliaA: Optimizing Prophylaxis Strategies of Hemophilia A With or Withou… https://t.co/z7yrpg9kPs
6/15
2020
New #webinar: "Crisis Communications: COVID-19 and the Future" on Thursday, June 25 at 2:00 PM ET. Join #NORD and M… https://t.co/eKphR5deiw
6/13
2020
#NORD is extending support to those impacted by #COVID19. By sharing resources on how to be prepared and seek prope… https://t.co/osCenujH7DThank you @patientchat & thanks for all who joined us for this #patientchat. We look forward to connecting w/ you o… https://t.co/P2qXqGiXnrCT: No one is immune to isolation. And in a time where we are *physically* isolating, we must make sure we aren’t e… https://t.co/GQ0wYaNCCP
Retweeted by NORD @spencerhealth @healthhashtags This is an awesome resource! Thank you for sharing and keeping us connected!
6/12
2020

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