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

3,411 Following   31,472 Followers   13,370 Tweets

Joined Twitter 10/29/09


Thank you for your support on #NationalPhilanthropyDay! If you weren’t able to give yesterday, there’s still time t… https://t.co/s81zLM3Pip
11/16
2019
The NORD Rare #Caregiver Respite Program provides a well-deserved break to eligible caregivers like Stephanie, who… https://t.co/qpdlt63ZWeToday is a special day. It's #NationalPhilanthropyDay! Today we recognize the impact philanthropy has had on societ… https://t.co/Qyb2vg8gEGTune in to the Children's Tumor Foundation's exclusive YouTube series, Tumor Talk! This series tackles what it's li… https://t.co/KZOpQtGRbkUnderstanding the #GeneTherapy Process & Aftercare - a #genetherapy webinar is on Wed. next week! Our speakers will… https://t.co/tpRNtyD61U
11/15
2019
ICYMI: The FDA's Role in Gene Therapy webinar now available on demand! Dr. Peter Marks and Julie Tierney discuss re… https://t.co/D04RuDsKRmPatient-powered initiatives change the world. NORD is conducting a quick & easy 30 year follow-up survey to better… https://t.co/aK2mJgtoe130+ million Americans are affected by #rarediseases & NORD is at the 🧡 of progress for those living w/ rare disease… https://t.co/Xrqqk7tqe2.@TargetCancer Foundation is proud to unite 100 clinicians & researchers for the 2019 Think Tank on Advancing Gastr… https://t.co/4Pbvi8Jog7Speaker interest applications are rolling in for #LivingRareForum! This 3-day event is a great opportunity for the… https://t.co/c6bM8oEbslThank you so much to all those who stopped by and connected with #NORD at the @orphan_drugs #WODCEurope in Barcelon… https://t.co/iPGzY0E7CwGreat to chat with the team from @RareDiseases During @OrphanConf #wordc2019 About #Ataxia #RareDisease #patient g… https://t.co/tZQvcPjjW3
Retweeted by NORD
11/14
2019
NEXT WEEK we will be hosting pt4 of our webinar series w/ @ASGCTherapy, Understanding the #GeneTherapy Process & Af… https://t.co/zznH8FQBKgNORD is pleased to welcome @cysticfibrosisr and @ae_society as new members! CFRI funds research, provides education… https://t.co/zb8SITwkvPPlease join @The Myositis Association and @Myositis and Understanding for a conversation about the challenges of ca… https://t.co/VWDcvGfHvBRDCA-DAP, developed by C-Path and @RareDiseases, provides new tools and methodologies to improve #clinicaltrial des… https://t.co/hE1V4OUqlH
Retweeted by NORDLesli Nordstrom, Director of Marketing & Communications is currently speaking on a panel at the #WODCEurope regardi… https://t.co/Xfvgwtu6whICYMI: #NORDSummit was all about "The Time is Now" for progress in #rarediseases, a message Matthew Cardinal (… https://t.co/4wBtpZ80tV
11/13
2019
Meet others living with pemphigus and pemphigoid at the IPPF Southern California Support Group Meeting on Nov 23. D… https://t.co/9KmY4HYsX2Be a rockstar at the upcoming #LivingRareForum in Cleveland! Living Rare, Living Stronger is a 3-day event for the… https://t.co/5FW1Klia0f @RetrophinRareNORD has landed in beautiful Barcelona, Spain for the World Orphan Drug Congress Europe @orphan_drugs! NORD will be… https://t.co/v7B1O3PgvBBE HEARD BY THE FDA! @FDADeviceInfo in collab w/ #NORD are hosting a survey to learn about the patient & caregiver… https://t.co/tnTJcQ3vWL
11/12
2019
50 films in 1 weekend! #DISORDER: The #RareDisease Film Festival is going on now! 🎬 We're proud to support such an… https://t.co/FbyR5OzVgeThe CCHS Network/CCHS Foundation is honoring the 5th International CCHS Day today with activist celebrities… https://t.co/xkutNmH1oG
11/9
2019
Team NORD is at the @US_FDA today meeting with our CBER colleagues and advancing new opportunities for our… https://t.co/OW7A1lUIIIBe a rockstar at the upcoming #LivingRareForum in Cleveland! Living Rare, Living Stronger is a 3-day event for the… https://t.co/IKLlyWCts5The CCHS Network/CCHS Foundation is honoring the 5th International CCHS Day, 11/9, with activist celebrities… https://t.co/LOelflzPzGNORD is a proud supporter of #DISORDER: The #RareDisease Festival! 📽️ Check out our zebras and enjoy the weekend in… https://t.co/YWe33bPDUZNORD understands that caring for a loved one is a generous gift. For Cathy, the NORD Rare Caregiver Respite Program… https://t.co/kieIbjoFPM
11/8
2019
We are now seeking submissions of people & orgs who have gone to extraordinary lengths in support of the… https://t.co/tiAIZE5i3sJoin other patients and caregivers at the International Pemphigus & Pemphigoid Foundation (@healourskin) Mid-Atlant… https://t.co/Um8AssJeqbWe are excited to partner w/ @FDAPatientinfo to present Patient Listening Sessions! They are small, informal discus… https://t.co/tbmC7bQRThIn Part 4 of our webinar series w/ @ASGCTherapy, Understanding the #GeneTherapy Process & Aftercare, we will explor… https://t.co/GhMhM37i2X
11/7
2019
Ocular melanoma (OM) is a rare form of melanoma that can have no noticeable symptoms in early stages, and is usuall… https://t.co/2tV7decAfs @rdmd Thanks for the share! @Cure4Ellie Like? No we LOVE it! 🧡 Lookin' awesome, Ellie!The #LivingRareForum is a three-day event of fun, learning & connecting. We are building the agenda now and are loo… https://t.co/VohkPxyz3Z
11/6
2019
Join @CurePSP on 11/9 at Michelle's Mixer! Meet us in Wayne, PA, for a fun night together w/ food, drinks, music &… https://t.co/TYa7BbIV1EIntroducing Pt 4 in our #GeneTherapy series - Understanding the Gene Therapy Process and Aftercare (11/20 at 2PM ED… https://t.co/SSU6rbI3qRHey @lenadunham - All of us at #NORD support your recent sharing of your #EhlersDanlos diagnosis. Living with a rar… https://t.co/icftsPeEJ1
11/5
2019
#NORD designed the #RareCaregiverRespiteProgram b/c we know caring for loved ones w/ #raredisease is a generous gif… https://t.co/PmrEICnSYVMeet Other Patients and Caregivers on November 10 in South Florida at the next International Pemphigus & Pemphigoid… https://t.co/wbKudqCGTSOpen enrollment for 2020 ACA exchange plans has officially begun! Be sure to check out https://t.co/JjKTGQyzSE to f… https://t.co/yxLT2VlkYLConnect with #NORD at World Orphan Drug Congress Europe @orphan_drugs in Barcelona! Stop by our booth & attend the… https://t.co/L3cSAT4SaLThank you for your service, Dr. Sharpless. Your keynote at #NORDSummit was truly a highlight to the program and you… https://t.co/jvkfaORe5WThank you to all of our #Running4Rare participants and supporters! It was a perfect, brisk day to take on the… https://t.co/ZRPbrI78xW
11/4
2019
.@PALServices facilitates more than just flights for patients and caregivers in need of critical air transportation… https://t.co/6OJuShjNap
11/3
2019
#NORD supports the appointment of @SteveHahnMD as the next @US_FDA commissioner. Dr. Hahn will bring strong researc… https://t.co/gOK7iFDd8ZBE HEARD BY THE FDA! @FDADeviceInfo in collab w/ #NORD are hosting a survey to learn about the patient & caregiver… https://t.co/YK9kcxEQNj4 new #videos just added to the NORD #RareDisease Video Library! #Adrenoleukodystrophy, #Protein C & S Deficiency,… https://t.co/hFs5qOuzYV
Retweeted by NORDOn our 1st day of #NORDSummit, a #cysticfibrosis patient org announced in front of a crowded room that the @US_FDAhttps://t.co/R1XCpFQugX#FlashbackFriday: Thanks so much @RepRaskin for meeting with our Maryland #RareAction Network team! We so appreciat… https://t.co/ZJiXScigUb
11/1
2019
#NORD CSO Pam Gavin is in Cambridge today with @eurordis CEO Yann Le Cam, Founder & Chairperson of the @UAE_GDA Dr.… https://t.co/wgxbjMyjUwUnfortunately, the Senate failed to pass a resolution to protect the #raredisease community & individuals with pre-… https://t.co/e8D23bUPIa @JeanBWeinberg @soulcycle @PURASyndrome @Kyleczeps @AFineBlogger We would love to connect and share all of the grea… https://t.co/4t6JOhiJqZ.@ChildrensTumor is ecstatic to provide an educational comic strip! Moxie & Sparx Explain NF1 features a young girl… https://t.co/jskVOvgTn4 @HinesJeremy Hi, Jeremy - the archived webinar will be posted on NORD's Youtube channel within the next week or so.#ThrowbackThursday: Thanks so much @SenTomCotton and @rep_stevewomack for meeting with Arkansas #RareAction Network… https://t.co/etOwBzNQWJStarting #ThrowbackThursday with a huge thanks to @soulcycle for hosting our first charity ride last week for an in… https://t.co/I7ZwubGpk5
Retweeted by NORD @JeanBWeinberg @soulcycle @PURASyndrome @Kyleczeps @AFineBlogger This is AWESOME! Thank you for sharing @JeanBWeinberg!
10/31
2019
Join us TODAY for our webinar "The FDA's Role in Gene Therapy"! Our speakers will discuss regulatory pathways for… https://t.co/EouPeiiYiE
10/30
2019
Join us TOMORROW for our webinar "The FDA's Role in Gene Therapy"! Our speakers will discuss regulatory pathways fo… https://t.co/tVS5aMgQI0
10/29
2019
ICYMI: NORD RAN State Ambassadors showed their stripes on the hill last Weds., meeting w/their legislators on maint… https://t.co/OdiRCRTrxeJoin us for our webinar "The FDA's Role in Gene Therapy" on 10/30! Our speakers will discuss regulatory pathways fo… https://t.co/kDQ2AczAWg
10/28
2019
@ChildrensTumor is ecstatic to provide an educational comic strip! Moxie & Sparx Explain NF1 features a young girl… https://t.co/ct7zctuE3sNORD is pleased to welcome @NECsociety as a member! The NEC Society is committed to building a world without necrot… https://t.co/arYSBVBG5aJoin us for our webinar "The FDA's Role in Gene Therapy" on 10/30! Our speakers will discuss regulatory pathways fo… https://t.co/67T9cU7vlM
10/25
2019
Advocacy & Awareness for Immune Disorders Association invites you to attend their Physician Educational Dinner, hel… https://t.co/NtXSqa5OsQConnect with #NORD at World Orphan Drug Congress Europe @orphan_drugs in Barcelona! Stop by our booth & attend the… https://t.co/ritLeiVzoL @lseiders3 Thank you for all of your kind words Lydia! We look forward to connecting at our next event!Were you eyeing our NORD pillows at our welcome booth? They are now in stock in our online store:… https://t.co/WnXRWtdbgd#NNPDF partnered with @RareDiseases to create this animated educational resource on Niemann Pick Type C. Please hel… https://t.co/PGt2bBuEIi
Retweeted by NORD
10/24
2019
2019 #NORDSummit broke records w/ 900+ registrants over 2 days of unforgettable keynotes, panels & networking. Tues… https://t.co/uxIALhU5omVery successful day advocating for @RareDiseases and @ArthritisFdn today on Capitol Hill. Thank you @lseiders3 for… https://t.co/TXaiAsDV1n
Retweeted by NORD#NORD was happy to host the IAMRARE Community Meeting today in Washington, DC. Looking forward to 2020! https://t.co/hTamXGA5cCAnother successful meeting with NORD’s policy team and #RareAction advocates during #DayOnTheHill! https://t.co/2TPWkHjwJiStraight from #NORDSummit to the Hill. Proud to be representing #NORD's #Maryland @RareAction Network with newly ap… https://t.co/1dEDCw29Ns
Retweeted by NORDAmelia Roberts & NY RAN Ambassador Mary Wooten with Gil Ruiz of Sen. Gillibrand’s office. #NORDSummit #DayOnTheHill https://t.co/Kx1nAAgjBBEngage federal partners to advance #raredisease research. #NORDSummit https://t.co/qGfgYoX2OIWhat a great turnout for our registry meeting, post-#NORDSummit. Together we are strong! #PowerofPatients https://t.co/WdybYxXsk4The time is NOW! The #NORDSummit registry meeting is about to beginning! https://t.co/vDHVNYfQFXThank you so much to @childrenshealth for providing this great cocktail reception to close out #NORDSummit. We had… https://t.co/aSs8Po0g98
10/23
2019
I was privileged to speak at the #NORDSummit this morning on the work the FDA is doing to support rare disease prod… https://t.co/8bOlGDC3ds
Retweeted by NORDAlready miss #NORDSummit? We've got good news! Register before Friday, October 25 for the 2020 NORD #RareDiseases &… https://t.co/k1BPOYIdA6 @AlexionPharma @EVERSANAcompany Deborah Fowler (@SoftBonesHPP): My hope is to continue to provide hope to patients… https://t.co/1sv1WAUfBS @AlexionPharma @EVERSANAcompany Lisa Sniderman King (@SanofiGenzyme): More broadly equitable access to genetic test… https://t.co/miv57l250b @AlexionPharma Sameer Antani (@NIH): How do you continuously learn? This is an ever-changing landscape. @AlexionPharma Bhaskar Sambasivan (@EVERSANAcompany): My hope is that we can share best practices and come to commo… https://t.co/wMotvLKlm7John Reynders (@AlexionPharma): I hope to continue the discussion and find answers for the challenges #rarediseasehttps://t.co/S7HZgnmSXtQ: What are you hoping to accomplish in your next endeavors? #NORDSummit @OleyFoundation Lisa Sniderman King: Yes, @Sanofi is manufacturer of treatments & not directly involved in dxing, b… https://t.co/wMWSIHgFzY @OleyFoundation Q: Do you see a future for dx in #raredisease using echo models for people who are too sick or don’… https://t.co/ESefh8CATAIt's that time again, the closing of #NORDSummit. We've had an inspiring, educational &fun two days - connecting w/… https://t.co/eLtuoxcG3tOne thing I was glad to see at the #NORDSummit was a diverse array of speakers. I don’t think I saw a #manel at any… https://t.co/KwEg39CyQc
Retweeted by NORD.@Eversana is working to smooth the process of access. They've embarked on large program, Patient Solutions, to foc… https://t.co/pWpgn3VBFO @EVERSANAcompany @SoftBonesHPP @NIH @NPRHealth @AlexionPharma @SanofiGenzymeWe're at our last panel of the day and learning about #AI technologies and how it influences (and will continue to… https://t.co/vjbQtlXvwJThank you so much @FDACommissioner for joining us this morning at #NORDSummit to discuss your career and new techno… https://t.co/lR7k0bSdWc @DrMerchant (Bayer): Never doubt the power of a small committed community to make change, as that’s the only way it… https://t.co/xQd1TOQ4fL
10/22
2019

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