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Who is affected?

Myasthenia gravis (MG) affects up to 123,000 people in Europe and causes significant disruption to daily life. This chronic neuromuscular autoimmune disease causes muscle weakness, particularly in the face, eyes and limbs. Symptoms such as drooping eyelids, double vision, difficulty speaking, chewing, swallowing and breathing can severely affect patients' ability to carry out daily activities. Beyond the physical challenges, MG can disrupt routines at home, school and work, affecting not only patients but also their families, social circles and overall mental well-being. Despite some successes in the European policy framework for rare diseases, the needs of MG patients and their care givers are often overlooked.

What is at stake?

The ongoing discussions on the revision of the Orphan Medicinal Products Regulation (OMP) and the possible introduction of an "EU Action Plan on Rare Diseases" mark a crucial moment for addressing the unmet needs of rare disease patients, such as those with MG. Failure to act risks perpetuating the current challenges faced by patients and caregivers, including misdiagnosis, limited access to specialised care and inadequate support systems. Without significant improvements in medical care, social support and patient rights, people with MG will continue to face barriers to a full life, affecting not only their health outcomes, but also their socio-economic participation and overall quality of life.

Why is now the time to act?

The joint efforts of MG patient organisations from seven EU countries under the banner "All United for MG" underline the urgency of immediate action. These organisations have come together to highlight the urgent needs of MG patients and caregivers and to develop concrete recommendations to improve rare disease management at both EU and national levels. As the EU Rare Disease Policy is under potential review and discussion, there is a unique opportunity to integrate the perspectives and recommendations of MG patients into the broader policy framework. By addressing the gaps in medical care, social support and patient rights outlined in the recommendations, policymakers can significantly improve the lives of MG patients and their caregivers and set a precedent for effective rare disease management across Europe.

Recommendations:

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. 

The recommendations are the result of a structured process based on literature review, (patient) expert workshops in five EU Member States and a developed white paper. Our aspiration is that those recommendations will be the basis for continued discussion, refinement, and most importantly – actions at EU and national levels.

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

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