It’s official. Europe’s first ever myasthenia gravis (MG) awareness day

Friday 2^nd June 2023

European Myasthenia Gravis Day: All Unite for improving the lives of MG patients

June 2^nd marked a historical moment for the MG Community – The first ever European MG Awareness Day!

The All United for MG Coalition – who represent MG Patients from 7 countries – issued a political Call for Action at the European Parliament in Brussels with clear recommendations to the European Commission, the European Parliament and European Member States. These recommendations include increasing knowledge, promoting cross-border cooperation, ensuring recognition of the disorder, raising public awareness, providing resources and establishing centres of expertise.

Thanks to the sponsorship of Members of the European Parliament, the call for action was presented at a high level event gathering 45 participants from European Institutions, Patient Advocacy Groups, and other stakeholders.

The call for action has garnered support from Tomislav Sokol (MEP - Group of the European People's Party) and Istvan Ujhelyi (MEP - Group of the Progressive Alliance of Socialists & Democrats) - and our ambition is to further gather signatures and garner supporters throughout Europe. We have successfully gathered signatures, and you can view them by clicking here.

Be part of the change: click here and sign up now to support the All United for MG campaign and stay updated on our progress and initiatives. Together, let's join forces to make a lasting impact. Join the movement today!

#AllUnitedforMG

EU-UNB-23-00014

What’s Trending?

Hear the lived experiences of MG experts from across Europe.

Find out the facts and common misconceptions around MG.

See the invisible symptoms of MG being made visible, to increase public awareness.

Together, we can make it happen

This is a day to celebrate how far we’ve come in our understanding of the burden of MG. But also, a day to acknowledge that there’s still so much more that needs to be done.

European MG Day is a key milestone in the mobilisation of the MG community who will continue to advocate for a better life, for each and every person living with this disease.

MG affects up to 123,000 people across Europe – with a significant impact on daily life.^1,2 It can disrupt routines at home, school and/or in the workplace. And this can go on to affect family, social circles, education or career progression, as well as physical and mental wellbeing.² But this doesn’t mean that life can’t still be lived to the fullest.

#AllUnitedForMG

What is European MG Day?

This is a day where we act as a collective to give a voice to MG patients, to raise awareness and improve care. It's a day to inform patients, caregivers, policymakers, and the broader public, to increase visibility of this disease and make sure the right support is available to those who need it – now and in the future. This is also a day to truly understand what it is to be a patient with MG.

It is the cumulative effort of MG patient associations from across Europe, united under a single banner to make this day possible.

This year is particularly special as it is the first ever ‘MG Day’ in Europe.

What is MG?

Myasthenia gravis (MG) is a serious, rare, and chronic neuromuscular autoimmune disease where the body's own defences can cause debilitating and potentially life-threatening muscle weakness.^3,4 Put simply, the body's natural defences are not working the way they’re supposed to.³ It often starts in the face, with first signs including eye muscle weakness that can lead to drooping eyelids and double or blurred vision.^3,4,5 MG also affects muscles involved in talking, chewing, swallowing, and breathing, and can extend to the arms and legs.^3,4,5

Because MG is rare, it can be difficult to recognise and fully understand the disease, its symptoms and the day-to-day impact. This can lead to delays in diagnosis and ineffective treatment.

Get involved with our MG Day activities to help change this. And change lives.

ABBM

Association Belge Contre Les Maladies Neuro – Musculaires Asbl
Jean-Marie Huet
President of ABMM
jmh7033@gmail.com

VISIT THEIR WEBSITE

AIM

Associazione Italiana Miastenia
Romina Givbertoni
Coordinator of AIM
aim@istituto-besta.it

VISIT THEIR WEBSITE

AMES

Associacion Miastenia de España
Raquel Pardo
President AMES
presidencia@miastenia.ong

VISIT THEIR WEBSITE

AMIS

Associations des myasthéniques isolés & Solidaires
Pierre Boulanger
President AMiS
pierre.boulanger@myasthenie.com

VISIT THEIR WEBSITE

MG-RO

Asociatia Nationala Miastenia Gravis Romania
Adriana Harja
President of Romanian Myasthenia Gravis Association
asociatia.miastenia@gmail.com

VISIT THEIR WEBSITE

H-MGA

Hellenic Myasthenia Gravis Association
Dimitris Zaftis
Vice President of H-MGA
mr.enduras@gmail.com

VISIT THEIR WEBSITE

MG Liga

Liga Myastenia Gravis
Lutgarde Allard
Board Member of MG Liga
allard.lutgarde@skynet.be

VISIT THEIR WEBSITE

Groupe Myasthenique AFM telethon

Groupe d'intérêt Myasthenique – AFM telethon
Annie Archer
President du groupe myasthénique de AFM telethon
aarcher@afm-telethon.fr

VISIT THEIR WEBSITE

Face 2 Face Myasthenia

Face 2 Face Myasthenia
Sylwia Luko
President of Face 2 Face Mysathenia
sylwialuko@gmail.com

References

Bubuioc AM, et al. J Med Life. 2021;14(1):7-16.
Szczudlik P, et al. Front Neurol. 2020;11:553626.
Gilhus NE, et al. Nat Rev Dis Primers. 2019;5(1):30.
Stetefeld H, et al. Neurol Res Pract. 2019;1(19):1-6.
Mantegazza R, et al. Ann N Y Acad Sci. 2003;998:413-23

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Thank you, again.

We’ll keep you informed of the All United For MG activities across Europe.