Our actions

Our actions

The first European Myasthenia Gravis Awareness Day

An important achievement of our coalition was the launch of the first ever European MG Awareness Day on June 2, 2023. The European Awareness Day aims to showcase the experiences and challenges of those affected by MG, to promote understanding and to advocate for improved standards of care.

Months of campaigning led to this first edition, culminating in the unveiling of six recommendations for concrete EU policy proposals.

Discover our 6 recommendations

Already mark your calendar for the second EU MG Day on 2nd June 2024 and stay connected to discover the events in your country. More information coming soon on this website.

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A petition with 6 recommendations for concrete EU policy proposals

Our coalition formulated 6 concrete recommendations aimed at championing real change for people living with MG and rare diseases. We presented them to the European Parliament in Brussels in June 2023. 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 recommendations were presented at a high level event gathering participants from European Institutions, Patient Advocacy Groups, and other stakeholders.

Our recommendations aiming at enhancing the EU’s role in rare disease management:

Improving medical care

Expand knowledge and expertise of rare diseases and reduce diagnosis errancy by ensuring that healthcare professionals, both GPs and specialists, such as neurologists and ophthalmologists for MG, have easy access to informative resources and materials on the disease.

Reinforce cross-border cooperation for the treatment of rare diseases like MG, notably by ensuring that patients are eligible for reimbursement of treatments received in another EU Member State.

Widening social care and support

Raise awareness about the disease amongst the wider public by creating a European day dedicated to myasthenia gravis, in coordination with stakeholders in each EU Member States.

Ensure mutual recognition of MG patients’ disability status and its associated benefits across all EU Member States. This can be achieved by introducing EU-wide the “EU disability card” already in voluntary use in eight countries.

Overcoming obstacles to access to patients’ and caregivers’ rights

Provide patients and caregivers with access to resources that can help them understand the disease and adapt their daily lives by anticipating its impact.

Promote the creation of centres of expertise across all EU Member States, particularly in Member States where none currently exist.

Our recommendations have already garnered support from several MEPs, including Tomislav Sokol (MEP - Group of the European People's Party) and Istvan Ujhelyi (MEP - Group of the Progressive Alliance of Socialists & Democrats). Our ambition? Further gather signatures and supporters throughout Europe.

Check out the call for action and the first signatories

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