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Collaborating with the patient community, for the patient community, in MG

Posted by
Sophie Housiaux, Medical Patient Engagement, Rare Disease Organization
28-Feb-2022


‘Collaborating for the myasthenia gravis patient community’: The full patient-led report can be read here.

In recognition of Rare Disease Day 2022, we are pleased to launch our new report ‘Collaborating for the myasthenia gravis community’. Created in partnership with patient organization leaders across Europe, this is a community-led call-to-action to identify, validate and initiate action to address the most urgent needs facing those living with myasthenia gravis (MG).

Working in close collaboration with the MG patient community
Patients are at the center of everything we do at UCB, so their voices must be front and center of any initiative. This report is the result of a long-lasting partnership with patient advocates in Europe, grounded in the framework of the EURORDIS-coordinated Rare 2030, where we listened to the real-life MG experience and, as part of a dedicated MG Patient Experience Expert Roundtable, set forth actions to tackle the most pressing issues uncovered.

I would like to thank each of the MG patient advocates for your invaluable contribution to this report, which is only possible due to your efforts and expertise. 

Looking ahead
This report is just the start — uniting advocates and experts from across Europe to issue a rallying cry to those who make decisions about MG management and treatment. In the words of the report’s Foreword co-authors, Raquel Pardo, AMES, Spain and Johan Voerman, Spierziekten Nederland, the Netherlands, “Collaboration must be the cornerstone of any effort to improve life with MG.” The time is now to take action. We hope that, upon reading this report, you are inspired to join us.

The findings
You can read the full patient-led report here to find out more about the key findings and calls-to-action. 

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