Alexion Pharmaceuticals

Alexion Pharmaceuticals Alexion, AstraZeneca Rare Disease is focused on pioneering new possibilities for the rare disease community. Community Guidelines: https://bit.ly/39x9gqy

We are driven by a mission to change what it means to live with a rare disease.

06/17/2026

The symptoms and day-to-day impact of generalised (gMG) are often invisible to others, but constant for people living with gMG.

For Marta, that invisibility means having to explain the burden of gMG again and again - an added layer of exhaustion beyond the symptoms themselves.

In the Rare Connections in gMG series, she shares how life with gMG can feel isolating, but how she is taking steps to help better navigate her condition and regain a sense of control.

06/12/2026

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.

06/09/2026

Navigating life with generalised (gMG) can mean overcoming hurdles that others don't see, including fluctuating symptoms, difficult days and the quiet weight of uncertainty.

In the Rare Connections in gMG series, Nick shares how support from those around him - and particularly his mom - have shaped how these moments are experienced and help him navigate the daily, sometimes unpredictable, challenges of gMG.

Immunoglobulin A nephropathy (IgAN) is a rare, inflammatory disease of the kidneys that can lead to chronic kidney disea...
06/06/2026

Immunoglobulin A nephropathy (IgAN) is a rare, inflammatory disease of the kidneys that can lead to chronic kidney disease and progress to end-stage kidney disease (ESKD). Learn more about this condition below.

aHUS is a type of thrombotic microangiopathy (TMA), a group of severe and potentially life-threatening rare disorders th...
06/05/2026

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.

Recognising the signs, symptoms and complications of TMAs is critical to supporting earlier understanding and action. Learn more about TMAs ⬇️

June is   Month, an annual moment to elevate the voices of those living with generalised   (gMG) and deepen understandin...
06/01/2026

June is Month, an annual moment to elevate the voices of those living with generalised (gMG) and deepen understanding of this rare autoimmune disorder.

Behind every diagnosis is an individual, ongoing journey.

In the Rare Connections in gMG film series, Marta, Deanna and Nick share their experiences with gMG.

These aren’t just stories. They’re a powerful reminder of the invisible burden of gMG and the strength it takes to navigate this condition, which can carry uncertainty and unpredictability, and where resilience becomes part of everyday life.

Step into their world at https://www.youtube.com/watch?v=Jvq0gLWGAEI 🎥

Experience the resilience and strength of three individuals living ...

We are proud to stand with the   community on   to bring greater visibility to this rare endocrine disease and help driv...
06/01/2026

We are proud to stand with the community on to bring greater visibility to this rare endocrine disease and help drive progress that can lead to better outcomes for patients and caregivers globally.

  (NF) is a rare, genetic condition involving the development of nonmalignant tumours that may affect the brain, spinal ...
05/30/2026

(NF) is a rare, genetic condition involving the development of nonmalignant tumours that may affect the brain, spinal cord and nerves. As the most common type of NF, neurofibromatosis type 1 (NF1) affects about 1 in 3,000 people worldwide.

Light chain (AL)  , also referred to as AL, is a rare, systemic and progressive disorder caused by defective plasma cell...
05/29/2026

Light chain (AL) , also referred to as AL, is a rare, systemic and progressive disorder caused by defective plasma cells in the bone marrow.

05/27/2026

Amit has lived most of his life with visible tumours called plexiform neurofibromas (PN) due to NF1 – a rare, progressive and lifelong condition. PN, which can cause a range of physical, social, emotional and mental health problems, left him feeling isolated from classmates and colleagues.

Today, Amit is a powerful voice for the NF1 community, sharing his journey to self-acceptance around the globe.

In recognition of , listen to Amit’s story and how he’s learned to embrace living with this .

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