Alexion Pharmaceuticals U.S. @AlexionPharmaUS
Alexion, AstraZeneca Rare Disease was created following the 2021 acquisition of Alexion Pharmaceuticals, Inc. U.S. Community guidelines: https://t.co/CDq4jNKuoe alexion.com Boston, MA Joined July 2021-
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Until next time! 👋 The last few days at #WorldOrphanUSA have been incredibly insightful. We spoke at keynotes and panel sessions, met with key #RareDisease stakeholders and brainstormed ways to advance orphan drug development and improve access to life-saving therapies.
It's official: Tamar Thompson, VP, Head of Corporate Affairs, is the incoming chair of @MassBio's Board of Directors. Under her leadership, we are confident that she'll drive significant progress in promoting health equity and fostering growth in Massachusetts. #StateofPossible24
We're thrilled to be sponsoring @MassBio #StateofPossible24, the premier event for the Massachusetts life sciences industry. To kick off, join us this morning to hear some exciting news about our VP and Head of Corporate Affairs Tamar Thompson.
From panel sessions on whole genome sequencing and newborn screening to achieving reimbursement in rare diseases, check out the full scope of our onsite presentations at #WorldOrphanUSA. We hope to see you there!
Day 1 of #WorldOrphanUSA is officially here! We look forward to gathering with stakeholders from across the #RareDisease ecosystem to explore innovative strategies for enhancing orphan drug development and accessibility to critical life-saving treatments.
What an exciting few days at #AANAM! We are grateful for the opportunity to gather with the neurology community. Through scientific exchange, we hope to inspire new research and findings that will transform care for people living with rare neurological diseases.
Dysregulation of the complement system is a key driver of #NMOSD, a disease that can result in destruction of cells in the optic nerve, spinal cord and brain. Learn more about NMOSD and our efforts to accelerate innovation for the community: spr.ly/6019wnBB5 #AANAM
Generalized #MyastheniaGravis (gMG) is a debilitating rare autoimmune disorder characterized by loss of muscle function and severe muscle weakness. Learn how this occurs below. #AANAM
We’re thrilled to be attending @AANmember’s 76th Annual Meeting! From sharing our latest updates across two rare, neurological diseases to highlighting the NMOSD community in our short film we’re proud of our onsite presence at #AANAM this year.
Join us in our mission to transform the lives of patients with #RareDiseases. If you're passionate about making a difference, thrive on innovation and collaboration, and enjoy a fast-paced environment, we'd love to hear from you. Explore opportunities at: spr.ly/6019Z0eOP
Many symptoms of paroxysmal nocturnal hemoglobinuria (#PNH) resemble those of other conditions, so it can take years to reach an accurate diagnosis. By raising awareness of PNH, we hope to shorten the diagnostic odyssey and reduce the risk of serious health complications.
Intended for US audiences only. Our leadership in complement inhibition has paved the way for innovative treatments for rare, complement-mediated diseases like #PNH. Learn what our recent FDA approval means for the PNH community: spr.ly/6010ZFUHj
Intended for US audiences only. The @US_FDA has approved our first-in-class, oral, Factor D inhibitor as add-on therapy to our C5 inhibitors for the treatment of extravascular hemolysis in adults with #PNH. Learn more about today’s news: spr.ly/6017ZtFoc
This month, we were proud to light up our Boston and New Haven offices to raise awareness and show support for the #Amyloidosis community. @Amyloidosisfdn #AmyloidosisAwarenessMonth
Symptoms of AL #Amyloidosis often mimic that of other diseases, making early detection and diagnosis difficult. In recognition of #AmyloidosisAwarenessMonth, explore what those symptoms are below.
Meg was 15 years old when she began experiencing weight loss, hair loss, and fatigue–symptoms which were initially dismissed by doctors. Eventually, she was diagnosed with #NMOSD, a #RareDisease. Learn about her journey and why Meg is raising awareness of NMOSD #NMOAwarenessMonth
As we close out #AmyloidosisAwarenessMonth, we must look ahead to the future. We know that people living with amyloid light chain (AL) #Amyloidosis are relying on us to deliver transformative medicines and we won’t stop until we do.
Most people living with #NMOSD experience unpredictable relapses, which can result in long-term disability. Hear about the impact of relapses for patients and how we’re working to raise awareness of the importance of relapse prevention for this #RareDisease.
This #AmyloidosisAwarenessMonth, learn about amyloid light chain (AL) #Amyloidosis, a #RareDisease that can result in significant organ damage and organ failure that can ultimately be fatal. Swipe for more.
#ICYMI: Our recent @US_FDA approval marks progress in innovation for neuromyelitis optica spectrum disorder (#NMOSD). See how we’re making a difference for patients living with this #RareDisease: spr.ly/6016Zz2qy
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Bajia Donald @BajiaDonald
0 Followers 3 Following PhD Candidate at Poznan University of Medical Sciences
KARE Rx Partners @KareRxPartners
67 Followers 281 Following At KARE RX Partners, we are dedicated to uniting independent #pharmacies across the USA.
Barry Bishop @barrybishop77
39 Followers 140 Following I believe we are in need of more breakthroughs, more hope, and more “side kicks” everyday.
bellaguo @RealIsabella7
1 Followers 94 Following Sales Manager-Tosun Pharmaceutical Exporting & Importing APIs, RLDs, Formulations, Impurity standards, Reference standards, Pharmaceutical intermediate, etc.
cloudcache consulting @Cloudcachecon
2K Followers 5K Following Our services include Salesforce Development, Customization, and Integration for all the Salesforce Clouds including Marketing Cloud, Service Cloud, Sales Cloud.
PharmD Eye @PharmdEye
29 Followers 239 Following Pharm.D, Pharma/Biotech, Drugs, Biologics, Generics, Biosimilars and more…
ACTA2 Alliance @Acta2Alliance
41 Followers 517 Following Supporting families living with Multisystemic Smooth Muscle Dysfunction Syndrome #MSMDS #UltraRare #ACTA2 mutation https://t.co/z2DSxXACs3
Nicole @Nicbrinkmann
4 Followers 693 Following
Martyna @MartymaJA
20 Followers 290 Following
EstherMaria @U32vzqszgWlOZ8I
3 Followers 350 Following
Marisa Pérez @marisapereez1
7 Followers 42 Following
Steven Connell @sconnell681
13 Followers 44 Following
HCGFloyd @HeatherCGF
198 Followers 577 Following Author, "Game Over, MS" & "The Compatibility Matrix." Shocked at humanity at age 5 when I found out Christmas is Jesus' birthday, & Santa is just a sideshow :)
Angela M @AMPharmD2000
3 Followers 159 Following
Richard Ruan @which_ruan
54 Followers 168 Following 🫀CVDi @broadinstitute 🐻 BioE ‘22 @UCBerkeley 🧠 Team Lead @Neuro_IC
Chiara Corpetti @Chiara_Corp
63 Followers 423 Following Toxicology and Pharmacology specialist, Annion Consulting. PhD in Toxicology and Pharmacology, in Sapienza University of Rome.
Seesey @Seesey685263
46 Followers 263 Following In the dull and boring world, there is also occasional luck. No cross, no crown.
António Cruz Alves @ToCruzAlves
576 Followers 841 Following Delegado Comercial na Generis Grupo Aurobindo, Angolano de Alfama, a viver em Lisboa, Benfiquista e encantado por Social Media Marketing
Hidden Disabilities S.. @HDSunflower_US
441 Followers 109 Following 🌻 Wearing the Hidden Disabilities Sunflower discreetly indicates to people around you that you may need additional support, help, or a little more time. 🌻
Tom @tomspatser
4 Followers 74 Following
Paulomi Bhattacharya @paulomibh
3 Followers 23 Following PhD Candidate @Caltech B.S. @MIT Molecular Neuroscience/Genomics
robert perry @LIFESCIZE
22 Followers 57 Following
Clark @lidlbil
18 Followers 501 Following
jo dulay @jdax929
1 Followers 16 Following
ragoliden @ragoliden
0 Followers 72 Following
sexylabcoats @sexylabcoats
40 Followers 37 Following
Uplifting Athletes @UpliftingAth
5K Followers 3K Following Nonprofit organization harnessing the power of sport to build a community that invests in the lives of people impacted by rare diseases.
Caio @cresendereis
72 Followers 663 Following
11|TEN Innovation Par.. @11teninnovation
95 Followers 263 Following Helping businesses grow through the power of innovation ecosystems: 1+1=10 or 11|TEN #REALizingInnovation
Laura Valentin @LauraVa48000861
132 Followers 3K Following Connect with our Surgeons at Orthopedic 2024 in Bangkok, Thailand #orthopedics #orthopedic #orthopaedics #rheumatology #orthopedicsurgery #orthopedicsurgeon
Advocacy for Neuroaca.. @NA_Advocacy
38 Followers 145 Following NA Advocacy supports patients who have neuroacanthocytosis and funds research aimed at alleviation. Contact: [email protected] NEW ACCOUNT - JUNE 2022
Joe Boncore @joeboncore
4K Followers 1K Following Principal at Commonwealth Counsel. Former CEO @MassBio & State Senator @ma_senate. PC alum. Dad to John, Philip & Dante. Patient Advocate #PatientDriven
Zues @zuesgodflow
136 Followers 1K Following
Phoenix Medication Ma.. @PHXMedMgmt
118 Followers 973 Following Phoenix provides innovative, cost-effective, durable, and fit-for-purpose medication management solutions
MUHAMMAD FATEH @46MUHAMMADFATEH
0 Followers 3 Following The best thing a parents gives to their children, is education. 💞Prophet MUHAMMAD (SAW)💞
Mj Balaguer @mjose_balaguer
67 Followers 594 Following
Kate Tew @Kate_Deux
6 Followers 66 Following
Rebecca Howard, PhD @RebeccaKDavis
27 Followers 190 Following
Alan People @alan_people
32 Followers 114 Following Investor, Technologist, Fisho, Adventurer...here to help
Zuzana @Zuzana63942326
1 Followers 45 Following
SRP Labs @SrpLabs
191 Followers 857 Following
Smart PillBox @PillboxSmart
77 Followers 276 Following A medical device for medication adherence & management Organize 📋 | Track 🔄 | Remind ⏰ | Notify 📲 Perfect for RTM Needs & provide better outcomes & revenues!
Caroline Humphries @Enilorac_23_23
228 Followers 2K Following
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
ASH @ASH_hematology
69K Followers 2K Following The American Society of Hematology (ASH) is the world's largest professional society concerned with the causes and treatments of blood disorders.
Billingsley @GeneBillingsley
217 Followers 200 Following I help co's & agencies manage incidents & improve their security stance. CRE phoenix. Yes I took the header pic. Infrequent baseball influencer. @bayoumedia
Wendy Erler @wendy_erler
355 Followers 120 Following Passionate about patient advocacy @AlexionPharma and those who are rare. Tweets/RTs are mine only.
Mary R Mcdermith @MaryRMcdermith
4K Followers 5K Following I am a 82 yr old democrat woman in CA. I am outspoken even somewhat rude. I lost my white gloves . I always vote blue but I do criticize them virulently.
John Novack @J2Novack
4K Followers 3K Following Former health journalist currently working to improve healthcare by making connections for good. https://t.co/c47urmBuIN #pinksocks
Erin Moriarty Wade @EMoriartyWade
9K Followers 10K Following Comms Dir at @carrainc - @AtlBizChron alum - mom of child w/#raredisease - #pinksocks @savvy_coop #clinicaltrial design board & #scleroderma workgroup
American Kidney Fund @KidneyFund
20K Followers 3K Following National independent nonprofit fighting CKD & ESRD w/prevention, education, clinical research & financial assistance. Take #KidneyAction with @akf_advocacy!
World Health Organiza.. @WHO
12.3M Followers 2K Following We are the #UnitedNations’ health agency - #HealthForAll. ▶️ Always check our latest tweets on #COVID19 for updated advice/information.
Elizabeth Varga @lizvarga
2K Followers 3K Following Dir. Clinical Genomics Research and Development; food allergy mom, advocate, runner, lover of life. Tweets = my own.
STAT @statnews
165K Followers 5K Following Reporting from the frontiers of health & medicine. Sign up for any of our 10 free newsletters here: https://t.co/CBx3GZBv31
Genomenon @genomenon
714 Followers 588 Following Genomic Intelligence for Pharma and Clinical Diagnostic Labs 🧬🖥️ #MastermindGIP
American Society of N.. @ASNKidney
39K Followers 856 Following Creating a 🌎 without #kidneydiseases. #KidneyWk
FamCaregiverAlliance @CaregiverAlly
9K Followers 2K Following For 40 years, FCA has championed caregivers through education, services, research, and advocacy. Tweets, Following, Followers, or Likes are not endorsements.
The Schwartz Center @theSCCH
4K Followers 1K Following The Schwartz Center for Compassionate Healthcare (SCCH) is dedicated to strengthening the human connection at the heart of healthcare. RTs are not endorsements.
Roselyn Lemus-Martin @roslemusmartin
46K Followers 17K Following Medical Affairs specialist | Molecular oncologist | AI enthusiast | @ASCO @ASEICAnews member | Teaching associate at @Harvard | Tweets in 🇪🇸🇺🇸
Alexion @AlexionPharma
13K Followers 331 Following Alexion, AstraZeneca Rare Disease was created following the 2021 acquisition of Alexion Pharmaceuticals, Inc. GL/NP/0116 GL/NP/0095
Manton Center Gene Di.. @MantonCenter
212 Followers 236 Following Research center focused on understanding the genetic basis of #rarediseases and #undiagnosed conditions Based at @bostonchildrens
AANP President @PresidentAANP
7K Followers 2K Following President of the American Association of Nurse Practitioners (AANP) Stephen A. Ferrara, DNP, FNP, FAANP, FAAN, sharing @AANP_News updates for NPs-as of 6/25/23
Soft Bones HPP @SoftBonesHPP
660 Followers 423 Following Hypophosphatasia education and support for families and caregivers with this rare metabolic bone disease.
Rare Disease Day US @RareDayUS
8K Followers 1K Following 2/28/19. #ShowYourStripes & join the movement in the US & around the world for #RareDiseaseDay. (Hosted in the US by @RareDiseases.)
CDC @CDCgov
5.6M Followers 256 Following CDC's official source for daily credible health & safety updates from Centers for Disease Control & Prevention. Privacy/comment policy: https://t.co/9LbZmE3Wzg
MassBio @MassBio
21K Followers 2K Following MassBio is committed to advancing MA's leadership in the life sciences to grow the industry, add value to the healthcare system & improve patient lives.
American Academy of P.. @AmerAcadPeds
136K Followers 520 Following Dedicated to the health, safety and well-being of infants, children, adolescents and young adults.
TIME Health @TIMEHealth
696K Followers 232 Following Health news, tips you can use, and exclusive health features from @TIME. Get our newsletter: https://t.co/vyqpx4iAqS. Email us at [email protected]
March of Dimes @MarchofDimes
62K Followers 3K Following March of Dimes leads the fight for the health of all moms and babies.
American Heart Associ.. @American_Heart
322K Followers 5K Following The official American Heart Association page. We want to help you live healthier. Check out our tips on healthy eating and becoming physically active.
NIH @NIH
1.7M Followers 323 Following Official account of the National Institutes of Health. NIH...Turning Discovery Into Health®. Privacy Policy: https://t.co/wOGwZ3huRk Engagement ≠ endorsement
National Cancer Insti.. @theNCI
223K Followers 5K Following The U.S. government’s agency for cancer research. Part of @NIH. Engagement ≠ endorsement. https://t.co/R9SpN6R3Fq
NIH NCCIH @NIH_NCCIH
47K Followers 890 Following Official account of the National Center for Complementary and Integrative Health—scientific research from @NIH. Privacy policies: https://t.co/HW2d6j87WF
Shriners Children's @shrinershosp
26K Followers 3K Following Official account for Shriners Children’s. Specializing in pediatric orthopaedics, burn care, spinal cord injury rehabilitation and cleft lip/palate.
East Tennessee Childr.. @EastTNChildrens
12K Followers 695 Following A free-standing, independent, not-for-profit pediatric medical center that has served East Tennessee since 1937.
Stanford Children's @StanfordChild
23K Followers 2K Following Top ranked children's hospital exclusively dedicated to kids & expectant mothers. Dig. Policy: https://t.co/ImJ2ElR3ia Nondiscrim. Policy: https://t.co/oJM6V2DVNR
Children's @childrensatl
31K Followers 4K Following Specialized for kids, Children’s is dedicated to better. Follow for hospital news and Strong4Life resources to help you raise healthy, safe, resilient kids.
National Alliance for.. @NA4Caregiving
11K Followers 1K Following The National Alliance for #Caregiving is a national, non-profit coalition, advancing family caregiving through research, innovation & advocacy.
HBAnet @HBAnet
5K Followers 4K Following The Healthcare Businesswomen’s Association's purpose is to further the advancement and impact of women in the business of healthcare #HBAimpact #4genparity
The Boston Globe @BostonGlobe
797K Followers 972 Following New England's leading source for breaking news and analysis.
Boston Chamber @bostonchamber
18K Followers 3K Following We work to make Greater Boston the best place for all businesses & all people to thrive.
MG Walk @MG_Walk
545 Followers 334 Following We walk to increase awareness about #myastheniagravis, raise funds for the MGFA, and show that we are united in our commitment to people with MG.
Myasthenia GravisWPA @MGAWPA
1K Followers 236 Following The #MyastheniaGravis Association of Western Pennsylvania is a Treatment & Advocacy Center dedicated to it's patient care, education & social/emotional support.
Myasthenia Gravis Fou.. @MyastheniaOrg
2K Followers 296 Following #MyastheniaGravis Foundation of America (MGFA) is the largest nonprofit patient advocacy organization dedicated to improving the lives of people with #MG.
Muscular Dystrophy As.. @MDAorg
21K Followers 2K Following MDA is the #1 voluntary health organization in the United States for people living with #MuscularDystrophy, #ALS, and related #neuromuscular diseases.
Myasthenia gravis @myastheniaRM
1K Followers 266 Following Helping you better understand, manage and talk about myasthenia gravis (MG). Join us at https://t.co/TCZU9dlteE
Media Affairs @FDAMedia
16K Followers 487 Following Official twitter account of FDA's Office of Media Affairs. (301) 796-4540; [email protected] Privacy Policy - https://t.co/8Udd9QVHV4
National Health Counc.. @NHCouncil
9K Followers 516 Following The National Health Council brings diverse organizations together to forge consensus and drive patient-centered health policy.
Stephen J. Ubl @steveubl
22K Followers 2K Following Proud to stand with the millions of Americans working to cure diseases. CEO of @PhRMA. Dad, husband & avid fan of @Twins & @Vikings.
City of Boston @CityOfBoston
360K Followers 135 Following Welcome to the City of Boston's official account. For non-emergency services, please call 311.
Life Science Cares Bo.. @LS_Cares
3K Followers 850 Following Uniting the greater Boston life science community in the fight against poverty. See our affiliates @LS_CaresPhilly @LS_CaresSD @LS_CaresBayArea
aHUS Awareness Day @aHUS24Sept
404 Followers 18 Following
People living with #RareDiseases face unique challenges, which are further exacerbated by health inequities that prevent quality access to care. Learn about the bold steps we’re taking to help make a difference in the lives of people with rare diseases: learn.az/6010nhTFm
Proud to have received the Luminary Advocacy Award from rare disease patients and advocates last night. As Co-Chair of the Congressional Rare Disease Caucus, I'll keep working to remove regulatory barriers that prevent&slowdown the development of cures for rare disease patients.
When Alyssa was diagnosed with a #RareDisease, she was scared of what it could mean for her future. After months of uncertainty, she finally received a diagnosis. Hear her thoughts on the importance of never giving up on finding the right doctor for you 🔊
When it comes to living with a #RareDisease, the burden on siblings and their role as carers is often overlooked. In partnership with @RareRevolutionM, we’re proud to share a new report that highlights the real impact of rare disease on the sibling experience.
Rare is many. Rare is strong. Rare is proud. In honor of #RareDiseaseDay next week, we’re excited to unite as a global community to raise awareness for the 400 million people living with a #RareDisease around the world. #ShareYourColours
While the definition of a rare disease differs across countries, one thing is certain: the number of people living with a #RareDisease is high. We’re committed to improving equitable access to healthcare for those living with rare. #RareDiseaseDay
Every #RareDisease patient has a unique story, but many share a common journey: challenges in reaching a diagnosis and accessing care. We’re on a mission to change that. Next week on #RareDiseaseDay, join us in raising awareness for the global community.
Congrats @DorisMatsui on being named co-chair of the Rare Disease Congressional Caucus. RDCC member companies are working urgently to bring treatments to the ~95% of #RareDiseases without a treatment today. Let's work together to foster #RareDiseaseInnovation for patients in 2023
Today, on #InternationalDayoftheGirl, we recognize the importance of supporting and promoting women and girls as leaders and invaluable contributors in the rare disease space and across all industries. #GirlsBelongHere2022
Kudos to @statnews and @AlexionPharmaUS for a fun, educational, and patient-centered #RareDisease event tonight. Learned much and saw friends IN PERSON!
Del Lebel, our Head of US Government Affairs and Policy, joins @statnews and other industry experts next week for an important discussion on aligning policy and science to transform the #RareDisease landscape. Learn more: statnews.com/event/rare-dis…
Sharon Barr's comments during our latest session "Policies That Can Help Science Help Patients" #STATLive @AlexionPharmaUS @AstraZeneca
Speaker Dr. Sharon Barr @AlexionPharmaUS has a profound understanding of what families go through. She shared that both of her children have a #raredisease. @PatientsRiseNow applauds her work and perspective: It takes more than science it take a community. #patients @statnews
Mark your calendars and join the session!
We’ll be live with @OnceUponAGene on July 14 for our next Listening & Learning Series focused on embedding patient perspectives in clinical trial design. Join the conversation at 12PM ET: bit.ly/3mTyFAt #Alexion30
170 interns are participating in a new summer #bioscience program called SPRINT, which is open to Connecticut college students. About 25 companies are involved in the internship program, including @AlexionPharmaUS, @boehringerus and @pfizer. buff.ly/3NXBYCy
We’re reflecting on a month of engagement, education & celebration. We will continue to shine a light on LGBTQUIA+ contributions and how we can remain committed to creating an inclusive and equitable culture where everyone feels like they belong. #Pride2022
Join MassBio for the #StateofPossible Conference on May 5 to hear from incredible leaders, discuss the latest industry insights, and celebrate the #lifesciences during an evening celebration. Don't miss our biggest conference of the year & register today: massbio.org/events/listing…
In just 2 days, this year's State of Possible will be in full swing. Register for a day full of amazing surprises, keynote speakers, networking and conversations tinyurl.com/MassSOP2022 #SOP2022 #StateofPossible #StateofPossible2022 #SOP22 #SOPLive #MassBioSOP #PatientDriven
AstraZeneca to open major research center in Kendall Square trib.al/aOyqZL0
We asked Tsveta Milanova, SVP of U.S. Commercial Operations at @AlexionPharmaUS & member of NPC’s Board of Directors, what one piece of advice she’d give to young women leaders. This is what she told us. Proud to celebrate the #WomenofNPC & #WomeninBiopharma. #WomensHistoryMonth
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