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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.

In recognition of , we're proud to join the community in building greater understanding of paroxysmal nocturnal haemogl...
10/12/2026

In recognition of , we're proud to join the community in building greater understanding of paroxysmal nocturnal haemoglobinuria ( ).

PNH is a rare blood disorder in which the complement system attacks and destroys abnormal red blood cells and can lead to serious complications, including thrombosis, abdominal pain and organ damage.

Thank you to the patients, caregivers and advocates who inspire our ongoing commitment to improving outcomes for this .

10/11/2026

Three people. Three countries. One diagnosis.

Today in Boston, we premiered Rare Connections in HPP at , a new short film putting a spotlight on (HPP), a rare disease that is often overlooked and misunderstood.

Through the lived experiences of Lisa, Mario and Antje – three people navigating life with HPP from around the world – the film shows how a can shape a person's life yet remain nameless for decades.

Step into their shoes and discover the connections that unite them:

For people living with (HPP), it can take years — sometimes a decade — to get the correct diagnosis.Behind this long w...
10/10/2026

For people living with (HPP), it can take years — sometimes a decade — to get the correct diagnosis.

Behind this long wait are constant uncertainty, numerous specialist visits and the emotional weight of not having a name to put to the signs or explain them to others.

Earlier and accurate diagnosis has the potential to change what those years hold for people living with this rare metabolic disease.

10/07/2026

A family trip can create lifelong memories—but for rare disease caregivers, preparing for the journey can mean going the extra mile.

Tina’s Big Trip, in our Inspired By series, follows two sisters preparing for a trip to Italy with their father and shines a light on the planning, strength and everyday resilience behind the caregiver experience.

Read Tina’s Big Trip and discover a story created to help families have caring, meaningful conversations about rare disease: https://tinasbigtrip.com/

Small but mighty are the four parathyroid glands that sit behind the thyroid and produce parathyroid hormone (PTH) to re...
10/06/2026

Small but mighty are the four parathyroid glands that sit behind the thyroid and produce parathyroid hormone (PTH) to regulate calcium and phosphate levels. When PTH is deficient, it can lead to (HypoPT), a rare endocrine disease that affects multiple body systems.

HypoPT symptoms can vary widely and escalate over time, which means early recognition and accurate diagnosis are key to reducing the risk of long-term complications.

Learn more about the signs below 👇

Generalised (gMG) can affect an entire household, not just the individual living with this rare neurological disease.8...
09/28/2026

Generalised (gMG) can affect an entire household, not just the individual living with this rare neurological disease.

84% of people living with gMG receive care from nonprofessional care partners, such as friends or family, to help navigate tasks as seemingly "small" as brushing teeth or helping with chores and errands.

The need for such support reflects not only the depth of the disease burden but the far-reaching effects gMG can have on daily life.

On , we're taking an extra moment to recognise the resilience it takes to live with a rare disease like atypical haemol...
09/24/2026

On , we're taking an extra moment to recognise the resilience it takes to live with a rare disease like atypical haemolytic uraemic syndrome (aHUS).

At Alexion, we're proud to stand with the aHUS community, today and every day.

We’re honoured that Alexion’s work to advance patient-informed clinical trials has been nominated for the inaugural Prix...
09/22/2026

We’re honoured that Alexion’s work to advance patient-informed clinical trials has been nominated for the inaugural Prix Galien USA Patient First Award.

This recognition reflects the invaluable contribution of patients, caregivers and advocates who shared their lived experience to strengthen clinical research.

In rare disease, expertise is essential to designing clinical trials that are more feasible, inclusive and meaningful for people and families they aim to benefit. We are proud to stand alongside others advancing patient-centred innovation and the partnerships that help move research forward.

Galien Foundation

09/21/2026

With neuromyelitis optica spectrum disorder ( ), uncertainty is a part of life.

NMOSD is a rare autoimmune disease that can involve unpredictable relapses, or attacks, and just one relapse can lead to permanent disability.

Improving our understanding of NMOSD is the first step to addressing that looming possibility and the heavy physical and emotional toll it can take.

Non-specific symptoms like low platelet count, anaemia and shortness of breath can be easy to confuse with common causes...
09/18/2026

Non-specific symptoms like low platelet count, anaemia and shortness of breath can be easy to confuse with common causes or write off entirely. But they could also be a sign of atypical haemolytic uraemic syndrome ( ).

aHUS is a rare disease that belongs to a family of blood clotting disorders called thrombotic microangiopathy ( ).

Learn more about aHUS, which can cause severe organ damage or death, if not diagnosed early.

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121 Seaport Boulevard
Boston, MA
02210

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+14752302596

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