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We urgently seek to understand patient journeys, find answers, and collaborate to deliver access to therapies that change lives.
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Ruthie, living with PNH, and her daughter
RUTHIE
LIVING WITH PNH

TRANSFORM Highlights

WEARABLE 

device included as an exploratory assessment in Alexion clinical trial for the first time

100% 

of international patient support programs initiated in 2019 included patient input

CREATED 

Patient and Stakeholder Value model to deepen understanding of patient journey 
STAR program logo

Accelerating Results 
for Patients through STAR

In 2019, we created STAR – Solutions To Accelerate Results for patients – a framework and method to accelerate the development of enterprise-wide solutions and integrate internal and external insights on the patient experience. The STAR mission is to bring together internal and external stakeholders to identify and solve urgent patient challenges. 

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Tanner, diagnosed with HPP at 4 days old
TANNER
LIVING WITH HPP

Providing
Patient Support

The impact of rare diseases on patients and their families is profound. The complexity of living with a rare condition can compound the difficulty. Our patient support programs are designed with the patient journey in mind. Regardless of whether a patient is using an Alexion therapy, we aim to increase the percentage of eligible patients who have been diagnosed with a condition that Alexion treats, that are included in Alexion patient support programs year over year.

In North America, we offer a personalized program that provides education, assistance with access and treatment support for people living with aHUS, gMG, HPP, LAL-D, NMOSD and PNH, and their caregivers. 

Outside North America, our patient support programs include traditional patient services like homecare, injection training and other support through programs like Alexiah, MyHPP or Healthcare at Home. The programs also include activities designed to respond to patient education needs and requirements for tools to track their symptoms.

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Aira living with HPP
AIRA
LIVING WITH HPP

Educating Patients
Around the World

Alexion is committed to educating patients about their disease by providing patient support programs that help people living with a rare disease to better manage their symptoms, understand their treatment and improve their overall health. Efforts in 2019 included: 

  • In Austria and Germany, we created an educational brochure for gMG patients, with patient input on content and format. The brochure has been rolled out in Austria, Canada, Germany, Japan and Switzerland.
  • For those living with PNH in Japan, we’ve developed a mobile app to help patients record their symptoms and share information directly with their physicians. We also created a “movie book” to explain PNH and its treatment through plain-language videos.

Roberta, diagnosed with gMG at 16 years old
ROBERTA
LIVING WITH gMG

Working with 
Patient Organizations

We work with patient organizations worldwide, and our support for global and regional organizations is governed by internal policies developed to ensure the integrity of our interactions with these organizations and their independence from Alexion.
 
We support people living with a rare disease by being a key influencer of patient organization engagement standards across the industry through ongoing, proactive thought leadership. In 2019, we: 

  • Involved patient organizations in our STAR workshops and LEAP (which stands for Learn, Evolve, Activate and deliver for Patients) sessions.
  • Connected patient organizations to each other to create channels for best practice sharing.
  • Engaged patient organizations in our ALS and Wilson disease programs to learn the ways they suggest we best work with their patient communities.

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An Alexion employee lecturing

A Foundation
of Quality

At Alexion, we believe that quality is for everyone, in accordance with our CSR-STAR foundation of ethics and compliance. Explicitly stated in our Quality Policy, this means that each Alexion employee is accountable for integrating quality into what we do every day through the decisions we make and actions we take. 

In 2019, we rolled out a new training program for General Managers in our various country offices to illustrate how bringing a quality mindset into decision-making helps us anticipate and mitigate quality risks. Similarly, a new, scenario-based quality training was delivered to our Development Team Leaders to ensure that they have the right tools to emphasize quality in their daily work. 
 
Also, in 2019, our Quality team announced the global rollout of an enhanced Product Complaint Management Process. This improved procedure strengthened our existing reporting process and is essential to understanding customer feedback, the performance of our medicines and areas for improvement.