# ![@AlexionPharmaUS Avatar](https://lunarcrush.com/gi/w:26/cr:twitter::1420474892043132929.png) @AlexionPharmaUS Alexion Pharmaceuticals U.S.

Alexion Pharmaceuticals U.S. posts on X about rare, community, future, in the the most. They currently have [-----] followers and [---] posts still getting attention that total [--] engagements in the last [--] hours.

### Engagements: [--] [#](/creator/twitter::1420474892043132929/interactions)
![Engagements Line Chart](https://lunarcrush.com/gi/w:600/cr:twitter::1420474892043132929/c:line/m:interactions.svg)

- [--] Week [---] -43%
- [--] Month [-----] +112%
- [--] Months [-----] -3.70%
- [--] Year [------] -11%

### Mentions: [--] [#](/creator/twitter::1420474892043132929/posts_active)
![Mentions Line Chart](https://lunarcrush.com/gi/w:600/cr:twitter::1420474892043132929/c:line/m:posts_active.svg)

- [--] Month [--] -39%
- [--] Months [--] +30%
- [--] Year [---] +29%

### Followers: [-----] [#](/creator/twitter::1420474892043132929/followers)
![Followers Line Chart](https://lunarcrush.com/gi/w:600/cr:twitter::1420474892043132929/c:line/m:followers.svg)

- [--] Week [-----] +0.13%
- [--] Month [-----] +0.21%
- [--] Months [-----] +0.45%
- [--] Year [-----] +2.80%

### CreatorRank: undefined [#](/creator/twitter::1420474892043132929/influencer_rank)
![CreatorRank Line Chart](https://lunarcrush.com/gi/w:600/cr:twitter::1420474892043132929/c:line/m:influencer_rank.svg)

### Social Influence

**Social category influence**
[finance](/list/finance)  3% [stocks](/list/stocks)  2%

**Social topic influence**
[rare](/topic/rare) 18%, [community](/topic/community) 4%, [future](/topic/future) 4%, [in the](/topic/in-the) 3%, [lives of](/topic/lives-of) 3%, [for the](/topic/for-the) 2%, [support](/topic/support) 2%, [stem](/topic/stem) 2%, [we are](/topic/we-are) 2%, [philosophy](/topic/philosophy) 2%

**Top accounts mentioned or mentioned by**
[@childrenstumor](/creator/undefined) [@asbmr](/creator/undefined) [@statnews](/creator/undefined) [@aanemorg](/creator/undefined) [@myastheniaorg](/creator/undefined) [@asnkidney](/creator/undefined) [@ashhematology](/creator/undefined) [@astct](/creator/undefined) [@cibmtr](/creator/undefined) [@astrazenecaus](/creator/undefined) [@childrenstumors](/creator/undefined) [@eaneurology](/creator/undefined) [@theendosocietys](/creator/undefined) [@softboneshpps](/creator/undefined) [@scfg](/creator/undefined) [@c2cboston](/creator/undefined)
### Top Social Posts
Top posts by engagements in the last [--] hours

"For some people signs and symptoms of hypophosphatasia (#HPP) arent just disruptive they can worsen over a persons lifetime and lead to impaired mobility and disability that can significantly change how they live"  
[X Link](https://x.com/AlexionPharmaUS/status/2013250092933808260)  2026-01-19T14:00Z [----] followers, [--] engagements


"Typically diagnosed in early childhood #Neurofibromatosis type [--] (NF1) is a rare progressive genetic condition that involves the development of nonmalignant tumors that may affect the brain spinal cord and nerves"  
[X Link](https://x.com/AlexionPharmaUS/status/2013974871168917897)  2026-01-21T14:00Z [----] followers, [---] engagements


"Rare Connections in gMG offers a powerful look into the personal stories of Marta Deanna and Nick three individuals living with generalized #MyastheniaGravis (gMG). Discover their strength and resilience at 🎥 http://RareConnectionsFilms.com http://RareConnectionsFilms.com"  
[X Link](https://x.com/anyuser/status/1990481835323744663)  2025-11-17T18:07Z [----] followers, [--] engagements


"Meg was [--] years old when she began experiencing weight loss hair loss and fatiguesymptoms 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"  
[X Link](https://x.com/anyuser/status/1991565308805763463)  2025-11-20T17:52Z [----] followers, [---] engagements


"Atypical hemolytic uremic syndrome is a rare disease that often presents suddenly with potentially severe complications and frequently develops into a progressive chronic condition with relapses. Learn more below about #aHUS a type of thrombotic microangiopathy (TMA)"  
[X Link](https://x.com/anyuser/status/2011800543925072236)  2026-01-15T14:00Z [----] followers, [---] engagements


"Paroxysmal nocturnal hemoglobinuria (#PNH) is a rare chronic progressive and potentially life-threatening blood disorder that is characterized by red blood cell destruction within blood vessels and white blood cell and platelet activation which may lead to blood clots"  
[X Link](https://x.com/anyuser/status/2015786805044346984)  2026-01-26T14:00Z [----] followers, [---] engagements


"Neuromyelitis optica spectrum disorder (#NMOSD) is a rare and debilitating autoimmune disease characterized by unpredictable relapses or attacks. Learn more about the condition below"  
[X Link](https://x.com/anyuser/status/2016511586244989414)  2026-01-28T14:00Z [----] followers, [--] engagements


"At the [----] Tandem Meetings of @ASTCT and @CIBMTR we look forward to sharing new research on HSCT-TMA to advance the scientific understanding of this rare post-transplant complication and reinforce our commitment to improving outcomes for people living with #HSCTTMA. #Tandem26"  
[X Link](https://x.com/anyuser/status/2019048299173405163)  2026-02-04T14:00Z [----] followers, [---] engagements


"Ahead of #RareDiseaseDay we reaffirm our commitment to pioneering innovations for the #RareDisease community and shortening time to diagnosis improving access to life-changing care and advancing health policies that support patients and families. https://alexion.us/news-centre-resources/articles/advancing-policy-partnerships-and-progress https://alexion.us/news-centre-resources/articles/advancing-policy-partnerships-and-progress"  
[X Link](https://x.com/anyuser/status/2019468582443254113)  2026-02-05T17:50Z [----] followers, [---] engagements


"HSCT-TMA is a rare severe and potentially life-threatening type of thrombotic microangiopathy (TMA) that occurs following hematopoietic stem cell transplantation a procedure to treat some types of cancers and other diseases. Learn more about this condition below. #Tandem26"  
[X Link](https://x.com/AlexionPharmaUS/status/2020135459905564990)  2026-02-07T14:00Z [----] followers, [---] engagements


"June is #MGAwarenessMonth Now and always our commitment to advancing research and awareness for generalized #MyastheniaGravis remains unwavering. Join us as we spotlight the stories of those living with this rare disease and educate around gMG throughout the month"  
[X Link](https://x.com/AlexionPharmaUS/status/1929523396640927941)  2025-06-02T13:00Z [----] followers, [--] engagements


"This #MGAwarenessMonth were proud to introduce Rare Connections in gMG a powerful short film underscoring the strength and resilience of three people living with generalised #MyastheniaGravis. Watch the film here: http://spr.ly/6018NCNoy http://spr.ly/6018NCNoy"  
[X Link](https://x.com/AlexionPharmaUS/status/1929598891176906990)  2025-06-02T18:00Z [----] followers, [---] engagements


"#BIO2025 kicks off today in Boston right near our Seaport HQ. Together with @AstraZenecaUS we are excited for dynamic discussions about the policies needed to foster drug development support access to care and drive meaningful change for the #RareDisease community"  
[X Link](https://x.com/AlexionPharmaUS/status/1934657225152135535)  2025-06-16T17:00Z [----] followers, [---] engagements


"Starting soon: Todays #BIO panel discussion with Tamar Thompson VP Head of Patient Experience & Insights on addressing the economic challenges of #RareDisease drug development. http://spr.ly/60154RbnV http://spr.ly/60154RbnV"  
[X Link](https://x.com/AlexionPharmaUS/status/1935022132754272424)  2025-06-17T17:10Z [----] followers, [--] engagements


"People living with the rare autoimmune disorder generalized #MyastheniaGravis (gMG) may experience a wide range of symptoms that can become more severe as the disease progresses. Explore more below"  
[X Link](https://x.com/AlexionPharmaUS/status/1935683994982527452)  2025-06-19T13:00Z [----] followers, [---] engagements


"We are honored to be attending the @ChildrensTumor Global NF Conference the largest gathering of the #Neurofibromatosis research and clinical community. Joining over [----] experts worldwide we look forward to discussing our latest findings in advancing NF patient care"  
[X Link](https://x.com/AlexionPharmaUS/status/1936046390729150835)  2025-06-20T13:00Z [----] followers, [---] engagements


"We were honored to return to @ChildrensTumors Global NF conference this year in Washington DC where we had the pleasure of engaging with the medical and scientific communities who share our commitment to transforming outcomes for people living with NF1 PN"  
[X Link](https://x.com/AlexionPharmaUS/status/1937133545832513665)  2025-06-23T13:00Z [----] followers, [---] engagements


"Generalised #MyastheniaGravis can feel invisible to others due to its rapidly fluctuating symptoms. Our recently premiered short film Rare Connections in gMG highlights the importance of being seen. Watch the full film here: http://spr.ly/60104XEGM http://spr.ly/60104XEGM"  
[X Link](https://x.com/AlexionPharmaUS/status/1937858315372941405)  2025-06-25T13:00Z [----] followers, [---] engagements


"We recently screened our Rare Connections short film collection at @EANeurology. Our latest addition Rare Connections in gMG shares the powerful stories of three individuals living with generalized #MyastheniaGravis. Watch the film at 🎬 http://RareConnectionsFilms.com http://RareConnectionsFilms.com"  
[X Link](https://x.com/AlexionPharmaUS/status/1940395034227921398)  2025-07-02T13:00Z [----] followers, [---] engagements


"What is amyloid light chain (AL) #amyloidosis Learn more about this #RareDisease below. Amyloid light chain (AL) #amyloidosis also referred to as AL is a rare systemic and progressive disorder caused by defective plasma cell in the bone marrow"  
[X Link](https://x.com/AlexionPharmaUS/status/1942206971957883378)  2025-07-07T13:00Z [----] followers, [---] engagements


"Were committed to advancing the understanding of paroxysmal nocturnal hemoglobinuria (#PNH) and showing our support for the PNH community. Learn about this rare chronic progressive and potentially life-threatening blood disorder below"  
[X Link](https://x.com/AlexionPharmaUS/status/1942569364282019974)  2025-07-08T13:00Z [----] followers, [---] engagements


"Were excited to be at the @TheEndoSocietys Annual Meeting in Endocrinology presenting new research in #Hypophosphatasia (HPP) that could help improve understanding of this rare disease for endocrine and bone metabolism researchers and clinicians from around the globe"  
[X Link](https://x.com/AlexionPharmaUS/status/1943656528562594285)  2025-07-11T13:00Z [----] followers, [---] engagements


"Symptoms of hypophosphatasia (#HPP) can appear at any age and accumulate or worsen over time they can cause significant disability impaired mobility or impaired mobility"  
[X Link](https://x.com/AlexionPharmaUS/status/1944743688069857481)  2025-07-14T13:00Z [----] followers, [--] engagements


"Symptoms of hypophosphatasia (#HPP) can appear at any age and accumulate or worsen over time they can cause significant disability or impaired mobility"  
[X Link](https://x.com/AlexionPharmaUS/status/1944756382277771661)  2025-07-14T13:50Z [----] followers, [---] engagements


"Rare Connections in gMG sheds light on the emotional and physical toll of generalized #MyastheniaGravis (gMG) through the voices of three individuals living with gMG. Watch the film at to learn about the strength and resilience of Marta Deanna and Nick. http://RareConnectionsFilms.com http://RareConnectionsFilms.com"  
[X Link](https://x.com/AlexionPharmaUS/status/1945830848617500747)  2025-07-17T13:00Z [----] followers, [---] engagements


"aHUS is a type of thrombotic microangiopathy (TMA) a group of severe and potentially life-threatening rare disorders that cause blood clots and damage to blood vessels which can lead to organ damage and death. See the signs symptoms & complications associated with TMAs"  
[X Link](https://x.com/AlexionPharmaUS/status/1947642828235935915)  2025-07-22T13:00Z [----] followers, [--] engagements


"#ICYMI: we launched Rare Connections in gMG to showcase the impact of generalized #MyastheniaGravis a rare often invisible disease on three people living with this condition. Click below to learn about the power that comes with being seen 👇 http://spr.ly/6012fuvHp http://spr.ly/6012fuvHp"  
[X Link](https://x.com/AlexionPharmaUS/status/1950179505458299113)  2025-07-29T13:00Z [----] followers, [--] engagements


"For many people amyloid light chain (AL) #amyloidosis is not accurately diagnosed until the later stages of the disease when prognosis is poor. Education around signs and symptoms is critical to help shorten time to diagnosis for patients"  
[X Link](https://x.com/AlexionPharmaUS/status/1952353837290815740)  2025-08-04T13:00Z [----] followers, [---] engagements


"Hypophosphatasia (#HPP) is a rare inherited and may be progressive metabolic disease characterized by defective mineralization impaired calcium and phosphate regulation and non-skeletal manifestations such as muscle weakness generalized fatigue and pain"  
[X Link](https://x.com/AlexionPharmaUS/status/1964312631105237193)  2025-09-06T13:00Z [----] followers, [--] engagements


"Hypophosphatasia (#HPP) is a rare inherited metabolic disease characterized by defective mineralization impaired calcium and phosphate regulation and non-skeletal manifestations such as muscle weakness generalized fatigue and pain"  
[X Link](https://x.com/AlexionPharmaUS/status/1964462636780662963)  2025-09-06T22:56Z [----] followers, [---] engagements


"The severity of hypophosphatasia (#HPP) can be wide-ranging. Signs and symptoms of the disease may present in many different ways and can accumulate or worsen over time"  
[X Link](https://x.com/AlexionPharmaUS/status/1967936515503186278)  2025-09-16T13:00Z [----] followers, [--] engagements


"Hypophosphatasia (#HPP) can affect males and females of all ages with certain symptoms more common based on a persons age"  
[X Link](https://x.com/AlexionPharmaUS/status/1969023677892071857)  2025-09-19T13:00Z [----] followers, [--] engagements


"To kick off #PNHAwarenessWeek were shining a light on this rare and potentially life-threatening blood disorder. PNH can be debilitating and we remain committed to advancing care and improving outcomes by keeping patients at the forefront of our efforts"  
[X Link](https://x.com/AlexionPharmaUS/status/1970110842138992785)  2025-09-22T13:00Z [----] followers, [--] engagements


"Neuromyelitis optica spectrum disorder (#NMOSD) is a rare and debilitating autoimmune disease characterized by unpredictable relapses or attacks. Discover more about this condition and its impact below"  
[X Link](https://x.com/AlexionPharmaUS/status/1970473289232318702)  2025-09-23T13:00Z [----] followers, [--] engagements


"aHUS is a type of thrombotic microangiopathy (TMA) a group of severe and potentially life-threatening rare disorders that cause blood clots and damage to blood vessels which can lead to organ failure and death. See the signs symptoms & complications of TMA #aHUSDay"  
[X Link](https://x.com/AlexionPharmaUS/status/1970880918173667432)  2025-09-24T16:00Z [----] followers, [--] engagements


"Did you know up to 50% of children with #Neurofibromatosis type 1(NF1) may develop nonmalignant tumors on the nerve sheaths called plexiform neurofibromas (PN) Some PN can grow fast and become large which can progressively interfere with normal physical functions"  
[X Link](https://x.com/anyuser/status/1993318759017185534)  2025-11-25T14:00Z [----] followers, [---] engagements


"Whether you're a seasoned professional or a fresh graduate eager to make your mark there's a place for you at Alexion. Join us in our mission to shape the future of #RareDisease research. Ready to embark on this journey with us Apply now: 🚀 http://spr.ly/6015df6cP http://spr.ly/6015df6cP"  
[X Link](https://x.com/AlexionPharmaUS/status/1799063774244360314)  2024-06-07T13:00Z [----] followers, [---] engagements


"Ready to join a team dedicated to transforming the lives of people living with rare diseases Look no further. Explore our career opportunities to help deliver breakthrough therapies and make a difference in the lives of those in need: http://spr.ly/60189BGyn http://spr.ly/60189BGyn"  
[X Link](https://x.com/AlexionPharmaUS/status/1814284061885481464)  2024-07-19T13:00Z [----] followers, [---] engagements


"Our "Inspired By" book series is a tool to educate children about rare diseases. Explore our latest book "Let's Make a Memory" which tells a real-life story about a mom living with #NMOSD a rare neurological disease. http://spr.ly/60139BJgl http://spr.ly/60139BJgl"  
[X Link](https://x.com/AlexionPharmaUS/status/1818632716042051928)  2024-07-31T13:00Z [----] followers, [---] engagements


"At Alexion we are committed to making a difference for people with #RareDiseases. If you care deeply about putting patients first and creating positive change check out our career opportunities today: http://spr.ly/6012cCxJA http://spr.ly/6012cCxJA"  
[X Link](https://x.com/AlexionPharmaUS/status/1819357494222766334)  2024-08-02T13:00Z [----] followers, [---] engagements


"Inspired by a real mom living with generalized myasthenia gravis (#gMG) our Inspired By book Klaras Talent tells a heartwarming tale of determination and resilience despite her everyday challenges. Learn how you can get a copy: http://spr.ly/6018YuFup http://spr.ly/6018YuFup"  
[X Link](https://x.com/AlexionPharmaUS/status/1828054800312746058)  2024-08-26T13:00Z [----] followers, [---] engagements


"Did you know #RareDiseases can lead to a shorter life span underscoring the urgent need for diagnostic and treatment options Learn about our work and our commitment to improving access and treatment for the rare disease community: http://spr.ly/6013YuNOB http://spr.ly/6013YuNOB"  
[X Link](https://x.com/AlexionPharmaUS/status/1829141968695304635)  2024-08-29T13:00Z [----] followers, [--] engagements


"Check out our "Inspired By" book Zara Shares Her Stripes a heartwarming story of embracing uniqueness and finding community. Follow Zara the zebra and her friends as they discover the beauty in their differences. Download your free copy here: http://spr.ly/6017mX0G1 http://spr.ly/6017mX0G1"  
[X Link](https://x.com/AlexionPharmaUS/status/1832041078070878603)  2024-09-06T13:00Z [----] followers, [---] engagements


"I chose cardiology because I found the heart to be a fascinating organ; it pumps our blood & emotionally its where our passion comes from. -Cristina Quarta on how being a cardiologist shapes her approach to clinical research for rare conditions http://spr.ly/6016Iucdp http://spr.ly/6016Iucdp"  
[X Link](https://x.com/AlexionPharmaUS/status/1889675976662974743)  2025-02-12T14:00Z [----] followers, [---] engagements


"Called the great pretender amyloidosis is a group of rare disease that is often misdiagnosed because its signs and symptoms can mimic other diseases. Learn how were working to address a broad spectrum of amyloidosis #AmyloidosisAwarenessMonth http://spr.ly/6017IYVkR http://spr.ly/6017IYVkR"  
[X Link](https://x.com/AlexionPharmaUS/status/1895836438542876956)  2025-03-01T14:00Z [----] followers, [---] engagements


"We sat down with Gianluca to learn about his philosophy to rare disease R&D and how Alexions patient-centered approach is innovating rare disease clinical trial design. Read to learn more: http://spr.ly/6015NrBNH http://spr.ly/6015NrBNH"  
[X Link](https://x.com/AlexionPharmaUS/status/1923000424249905586)  2025-05-15T13:00Z [----] followers, [--] engagements


"Our mission is to transform the lives of people affected by rare diseases and devastating conditions by continuously innovating and creating meaningful value in all that we do. Learn more our unwavering commitment to the #RareDisease community: https://alexion.us/about-us https://alexion.us/about-us"  
[X Link](https://x.com/AlexionPharmaUS/status/1942931751896039495)  2025-07-09T13:00Z [----] followers, [--] engagements


"Learn how emerging technologies like AI could potentially transform how we forge new regulatory pathways for rare disease treatments: https://alexion.us/news-centre-resources/articles/paving-regulatory-pathways-in-rare-disease https://alexion.us/news-centre-resources/articles/paving-regulatory-pathways-in-rare-disease"  
[X Link](https://x.com/AlexionPharmaUS/status/1943309231047725387)  2025-07-10T14:00Z [----] followers, [---] engagements


"We sat down with Gianluca to learn about his philosophy on rare disease R&D and how Alexions patient-centered approach is innovating rare disease clinical trial design. Learn more: https://alexion.us/news-centre-resources/articles/patient-centric-clinical-trial https://alexion.us/news-centre-resources/articles/patient-centric-clinical-trial"  
[X Link](https://x.com/AlexionPharmaUS/status/1948367566826570076)  2025-07-24T13:00Z [----] followers, [---] engagements


"Meet our diagnostics team and learn about their work to empower patients to make more informed decisions about their care"  
[X Link](https://x.com/AlexionPharmaUS/status/1949817229480022245)  2025-07-28T13:00Z [----] followers, [--] engagements


"Our mission is to transform the lives of people affected by rare diseases and devastating conditions by continuously innovating and creating meaningful value in all that we do. Learn more about who we are at Alexion AstraZeneca #RareDisease: http://spr.ly/6010fkO28 http://spr.ly/6010fkO28"  
[X Link](https://x.com/AlexionPharmaUS/status/1953078608693531057)  2025-08-06T13:00Z [----] followers, [---] engagements


"Sarah Rhee discusses how were paving new regulatory pathways through collaboration and creativity"  
[X Link](https://x.com/AlexionPharmaUS/status/1953441120324645178)  2025-08-07T13:00Z [----] followers, [--] engagements


"Like many #RareDiseases symptoms of generalized #MyastheniaGravis (gMG) can easily masquerade as many disorders often delaying diagnosis for years to come. Recognizing these symptoms can lead to faster diagnoses and help ensure the best possible outcomes"  
[X Link](https://x.com/AlexionPharmaUS/status/1954890549321760990)  2025-08-11T13:00Z [----] followers, [---] engagements


"Symptoms of hypophosphatasia (#HPP) can appear at any age and accumulate or worsen over time they can cause significant disability or impaired mobility"  
[X Link](https://x.com/AlexionPharmaUS/status/1955615323937231074)  2025-08-13T13:00Z [----] followers, [---] engagements


"Generalized #MyastheniaGravis (gMG) can feel invisible to others due to its rapidly fluctuating symptoms. Our short film Rare Connections in gMG highlights the importance of being seen. Watch the full film at http://RareConnectionsFilms.com http://RareConnectionsFilms.com"  
[X Link](https://x.com/AlexionPharmaUS/status/1958514427306619223)  2025-08-21T13:00Z [----] followers, [---] engagements


"People living with neuromyelitis optica spectrum disorder (#NMOSD) often experience relapses which can be severe and result in permanent disability. Were committed to educating around the impact of relapses and the importance of timely diagnosis and treatment for patients"  
[X Link](https://x.com/AlexionPharmaUS/status/1959964025522909423)  2025-08-25T13:00Z [----] followers, [---] engagements


"What happens when three people living with neuromyelitis optica spectrum disorder (#NMOSD) write and exchange letters about their individual journeys and read them for the first time on camera Watch our short film Rare Connections in NMOSD to see it unfold:"  
[X Link](https://x.com/AlexionPharmaUS/status/1963263761751347665)  2025-09-03T15:32Z [----] followers, [---] engagements


"At the @ASBMR [----] Annual Meeting in Seattle Washington were presenting research in hypophosphatasia (#HPP) and engaging with the bone metabolism community to drive greater understanding of this rare progressive disease"  
[X Link](https://x.com/AlexionPharmaUS/status/1963995546995109898)  2025-09-05T16:00Z [----] followers, [---] engagements


"Were grateful to have attended the @ASBMR Annual Meeting where we had the chance to engage in meaningful conversations with medical and scientific experts who share our dedication to advancing innovation in hypophosphatasia (#HPP)"  
[X Link](https://x.com/AlexionPharmaUS/status/1965097808131764315)  2025-09-08T17:00Z [----] followers, [---] engagements


"Last week Alexion AstraZeneca Rare Disease joined the Global Genes RARE Drug Development Symposium in Boston. Grateful for the chance to connect share and learn from the rare disease community as we work together to drive innovation and support those affected"  
[X Link](https://x.com/AlexionPharmaUS/status/1965399837026767312)  2025-09-09T13:00Z [----] followers, [--] engagements


"Hematopoietic stem cell transplant-associated thrombotic microangiopathy is a type of TMA a group of severe and potentially life-threatening rare disorders that cause blood clots & damage to the walls of the smallest blood vessels that occurs following HSCT. Learn more below"  
[X Link](https://x.com/AlexionPharmaUS/status/1968298899354927151)  2025-09-17T13:00Z [----] followers, [---] engagements


"Learn how Alexion is helping to advance genomic newborn screening to transform rare disease care: http://spr.ly/6015ATW8N http://spr.ly/6015ATW8N"  
[X Link](https://x.com/AlexionPharmaUS/status/1968718176981512348)  2025-09-18T16:46Z [----] followers, [--] engagements


"Alexion is helping to transform the diagnostic odyssey and empowering those living with rare diseases to make more informed decisions about their care through genomic newborn screening initiatives. Learn more: http://spr.ly/6018ATWPq http://spr.ly/6018ATWPq"  
[X Link](https://x.com/AlexionPharmaUS/status/1968718906551333265)  2025-09-18T16:48Z [----] followers, [--] engagements


"Today on #aHUSDay we recognize those living with atypical hemolytic uremic syndrome. We are inspired by the strength and resilience of the aHUS community and remain dedicated to improving care for those affected by this severe and devastating disease. #aHUS24Sept"  
[X Link](https://x.com/AlexionPharmaUS/status/1970835614208553378)  2025-09-24T13:00Z [----] followers, [---] engagements


"When Joe was first diagnosed with #PNH he was overwhelmed by the prognosis. Despite this he was determined to face it head-on. Today he shares how his encounter with PNH has made him even more resilient to adversity when the odds are stacked against him. #PNHAwarenessWeek"  
[X Link](https://x.com/AlexionPharmaUS/status/1971197997028635044)  2025-09-25T13:00Z [----] followers, [---] engagements


"Like many rare diseases theres limited awareness of generalized #MyastheniaGravis a rare autoimmune disorder characterized by loss of muscle function and severe muscle weakness. Were committed to advancing understanding of this #RareDisease to benefit patients across the 🌎"  
[X Link](https://x.com/AlexionPharmaUS/status/1973009968015036788)  2025-09-30T13:00Z [----] followers, [---] engagements


"On Sept [--] we united virtually for Rare Conversations with the global rare disease communitysharing experiences insights and the power of data to drive change. Thank you to all who joined #RareConversations #RareDiseaseCommunity"  
[X Link](https://x.com/AlexionPharmaUS/status/1974097103623163908)  2025-10-03T13:00Z [----] followers, [--] engagements


"What is generalized #MyastheniaGravis (gMG) Learn more about this #RareDisease below"  
[X Link](https://x.com/AlexionPharmaUS/status/1976271428904202341)  2025-10-09T13:00Z [----] followers, [--] engagements


"Learn how patient-centered innovation - grounded in science patient input and smart public #HealthPolicy - can accelerate progress and deliver meaningful solutions for people living with #RareDisease. Read more in @STATNews. http://spr.ly/6019Aqmb7 http://spr.ly/6019Aqmb7"  
[X Link](https://x.com/AlexionPharmaUS/status/1976286531246600247)  2025-10-09T14:00Z [----] followers, [--] engagements


"On Global #PNHDay2025 were joining the rare disease community to bring attention to paroxysmal nocturnal hemoglobinuria (PNH). By deepening awareness and understanding were committed to improving outcomes for those living with PNH. #PNHAwareness2025 #TogetherForPNH"  
[X Link](https://x.com/AlexionPharmaUS/status/1977358591955701854)  2025-10-12T13:00Z [----] followers, [--] engagements


"People living with paroxysmal nocturnal hemoglobinuria (PNH) can experience a delayed diagnosis by [--] or more years due to diverse symptoms and varied clinical presentation. Explore the signs and symptoms of PNH below. #PNHDay2025 #PNHAwareness2025"  
[X Link](https://x.com/AlexionPharmaUS/status/1977403893689577625)  2025-10-12T16:00Z [----] followers, [--] engagements


"Due to the unpredictability and fluctuating symptoms of generalized #MyastheniaGravis (gMG) those living with this #RareDisease may feel invisible. Learn about the power of feeling seen while navigating life with gMG in Rare Connections in gMG. Watch at http://RareConnectionsFilms.com http://RareConnectionsFilms.com"  
[X Link](https://x.com/AlexionPharmaUS/status/1978808146249351658)  2025-10-16T13:00Z [----] followers, [--] engagements


"Thank you @SoftBonesHPPs Deborah Fowler for sharing your journey as a #RareDisease mom & advocate at the @STATNews fireside chat. Raising awareness & driving policy change is key to improving lives. Proud to sponsor the discussion. #RareDiseaseAwareness"  
[X Link](https://x.com/AlexionPharmaUS/status/1980295952398254491)  2025-10-20T15:32Z [----] followers, [--] engagements


"This Massachusetts STEM Week our teams are giving back inspiring future scientists and fostering opportunity across Greater Boston with Science Club for Girls and Cradles to Crayons. @SCFG @c2cboston"  
[X Link](https://x.com/AlexionPharmaUS/status/1981797492233539755)  2025-10-24T18:58Z [----] followers, [--] engagements


"On #WorldAmyloidosisDay and every day were dedicated to raising awareness of this group of complex #RareDiseases. Guided and inspired by those impacted we strive to bring new hope to this community through advances in diagnosis and care. Like this post to show your support"  
[X Link](https://x.com/AlexionPharmaUS/status/1982432024599167148)  2025-10-26T13:00Z [----] followers, [--] engagements


"Hypophosphatasia (#HPP) is more than a bone disease. HPP can affect other parts of the body beyond the skeleton leading to a range of symptoms that can be overlooked"  
[X Link](https://x.com/AlexionPharmaUS/status/1982846423805620463)  2025-10-27T16:26Z [----] followers, [--] engagements


"For some people signs and symptoms of hypophosphatasia (#HPP) arent just disruptive they can worsen over a persons lifetime and lead to impaired mobility and disability that can significantly change how they live"  
[X Link](https://x.com/AlexionPharmaUS/status/1983156801651581283)  2025-10-28T13:00Z [----] followers, [--] engagements


"Greetings from the @AANEMorg Annual Meeting and @MyastheniaOrg Scientific Session in San Francisco We look forward to showcasing our latest research in generalized #MyastheniaGravis (gMG) and spotlighting patient experiences through screening our Rare Connections in gMG"  
[X Link](https://x.com/AlexionPharmaUS/status/1983519188892221554)  2025-10-29T13:00Z [----] followers, [---] engagements


"Every year on #WorldHPPDay we shine a light on the inspiring #Hypophosphatasia (HPP) community and educate on the daily challenges of this rare metabolic condition. By listening to and learning from this patient community together we can transform the future of HPP care"  
[X Link](https://x.com/AlexionPharmaUS/status/1983881575071707431)  2025-10-30T13:00Z [----] followers, [--] engagements


"Hypophosphatasia (#HPP) can take different forms for people of all ages but pain is often reported"  
[X Link](https://x.com/AlexionPharmaUS/status/1983881575801426268)  2025-10-30T13:00Z [----] followers, [--] engagements


"Today concludes the @AANEMorg Annual Meeting and @MyastheniaOrg Scientific Session Through our latest research in generalized #MyastheniaGravis (gMG) and screening our Rare Connections in gMG short film we were proud to reinforce our commitment to the patients we serve"  
[X Link](https://x.com/AlexionPharmaUS/status/1984651650913452166)  2025-11-01T16:00Z [----] followers, [--] engagements


"As @ASNKidney kicks off its annual #KidneyWk [----] in Houston TX we're proud to present our latest research in aHUS HSCT-TMA CSA-AKI & IgA nephropathy. We look forward to engaging with those who share our commitment to shaping the future of treatment for rare kidney diseases"  
[X Link](https://x.com/AlexionPharmaUS/status/1986071002632134874)  2025-11-05T14:00Z [----] followers, [---] engagements


"On #STEMDay we celebrate the brilliant minds driving scientific innovation and transforming the rare disease landscape. Recently we shared this commitment with budding scientists at our US R&D sites in New Haven Connecticut and Kendall Square Massachusetts"  
[X Link](https://x.com/AlexionPharmaUS/status/1986780679724470313)  2025-11-07T13:00Z [----] followers, [--] engagements


"Immunoglobulin A (IgA) nephropathy is a rare chronic kidney disease that begins when the body develops abnormal IgA proteins resulting in immune complexes that are deposited in the kidneys causing damage. Take some time to learn more about this rare disease. #KidneyWk"  
[X Link](https://x.com/AlexionPharmaUS/status/1986795779239891310)  2025-11-07T14:00Z [----] followers, [---] engagements


"Atypical hemolytic uremic syndrome is a rare disease that often presents suddenly with potentially severe complications and frequently develops into a progressive chronic condition with relapses. Learn more below about #aHUS a type of thrombotic microangiopathy. #KidneyWk"  
[X Link](https://x.com/AlexionPharmaUS/status/1987158168007266761)  2025-11-08T14:00Z [----] followers, [--] engagements


"Were wrapping up an inspiring few days at @ASNKidney #KidneyWk where we had the opportunity to engage in scientific dialogue and contribute to critical conversations to help deepen the understanding of rare kidney diseases"  
[X Link](https://x.com/AlexionPharmaUS/status/1987611151442624611)  2025-11-09T20:00Z [----] followers, [--] engagements


"Amyloid light chain (AL) #amyloidosis often occurs from ages 50-80 with the median age of diagnosis occurring between 60-67 years. Learn more about this systemic and progressive disease below"  
[X Link](https://x.com/AlexionPharmaUS/status/1988970106055962643)  2025-11-13T14:00Z [----] followers, [--] engagements


"Learn how were shaping the future of R&D with real-world insights into rare disease: http://spr.ly/60107JvDI http://spr.ly/60107JvDI"  
[X Link](https://x.com/AlexionPharmaUS/status/1985346230180892949)  2025-11-03T14:00Z [----] followers, [--] engagements


"As the HPP Registry marks its 10th anniversary we celebrate its impact. Learn how registries help to tell a collective patient story and help shape a better future for those living with this rare disease: http://spr.ly/60117JvT7 http://spr.ly/60117JvT7"  
[X Link](https://x.com/AlexionPharmaUS/status/1985361329243189393)  2025-11-03T15:00Z [----] followers, [--] engagements


"#Neurofibromatosis (NF) is a rare progressive genetic condition with the most common type being neurofibromatosis type [--] (NF1). NF1 can impact every organ system and be involved in the development of non-malignant tumors that may affect the brain spinal cord and nerves"  
[X Link](https://x.com/anyuser/status/1991144429927723220)  2025-11-19T14:00Z [----] followers, [---] engagements


"We're excited to be at the 67th @ASH_hematology Annual Meeting and Exposition where well present our latest research in rare hematology and underscore our commitment to driving meaningful advances for those living with rare conditions. #ASH25"  
[X Link](https://x.com/anyuser/status/1997305028839694454)  2025-12-06T14:00Z [----] followers, [--] engagements


"Were committed to advancing the understanding of paroxysmal nocturnal hemoglobinuria (PNH) and showing our support for the #PNH community. Learn about this rare chronic progressive and potentially life-threatening blood disorder below. #ASH25"  
[X Link](https://x.com/anyuser/status/1998029799080550739)  2025-12-08T14:00Z [----] followers, [---] engagements


"HSCT-TMA is a rare severe and potentially life-threatening type of TMA that occurs following hematopoietic stem cell transplantation a procedure to treat some types of cancers and other diseases. Learn more about this condition below. #ASH25"  
[X Link](https://x.com/anyuser/status/1998075098809368643)  2025-12-08T17:00Z [----] followers, [--] engagements


"As the 67th @ASH_hematology Annual Meeting and Exposition comes to a close we are proud to have showcased new research that reinforces our commitment to people living with rare hematological conditions. #ASH25"  
[X Link](https://x.com/anyuser/status/1998392191714988465)  2025-12-09T14:00Z [----] followers, [--] engagements


"Light chain (AL) #amyloidosis also referred to as AL is a rare systemic and progressive disorder caused by defective plasma cell in the bone marrow. #ASH25"  
[X Link](https://x.com/anyuser/status/1998437487505559733)  2025-12-09T17:00Z [----] followers, [---] engagements


"Generalized #MyastheniaGravis (gMG) can feel invisible to others due to its rapidly fluctuating symptoms. Our short film Rare Connections in gMG highlights the importance of being seen. Watch the full film at http://RareConnectionsFilms.com http://RareConnectionsFilms.com"  
[X Link](https://x.com/anyuser/status/2000600213397106880)  2025-12-15T16:13Z [----] followers, [---] engagements


"Neuromyelitis optica spectrum disorder (#NMOSD) is associated with unpredictable attacks also known as relapses which can lead to long-term disability like vision loss or paralysis. Explore what other symptoms are associated with this #RareDisease below"  
[X Link](https://x.com/anyuser/status/2001698982121165169)  2025-12-18T17:00Z [----] followers, [---] engagements


"Generalized #MyastheniaGravis (gMG) is a debilitating rare autoimmune disorder characterized by loss of muscle function and severe muscle weakness. Learn how this occurs below"  
[X Link](https://x.com/anyuser/status/2003465619266589074)  2025-12-23T14:00Z [----] followers, [---] engagements

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