Resilience through Innovation & Sustainability
As part of the fight against rare diseases discussed extensively at European level, the ‘’All United for MG”1 coalition, a group of patient associations and representatives2, is organising the first European Myasthenia Gravis Awareness Day. The objective is to raise awareness of this rare neuromuscular autoimmune disease and its consequences for patients and their caregivers. The disease has a huge impact on patients’ social, professional and family lives as 80% of them have difficulty working, 80% feel frustrated and almost 60% find it hard to meet family needs 3. To elevate the understanding of the disease and improve MG patients’ lives, All United for MG issues a call for action with six concrete recommendations in the European Parliament, with the support of European leaders.
The #AllUnitedforMG coalition, with the institutional support of argenx, brings together European patient associations and representatives from Belgium, France, Germany, Greece, Italy, Romania, Poland and Spain and aims to create awareness and gain recognition of this life-threatening disease, strengthen patients’ rights for a better quality of life and obtain better patient care. The disease affects between 56.000 and 100.000 people in Europe
“Raising awareness about myasthenia gravis is not just about spreading knowledge, it’s about empowering those who are living with it. It’s about fostering compassion and understanding amongst the general public to improve healthcare, break down stigmas, and ultimately create a world where people with MG can thrive. Our aim is to enhance patients’ quality of life and reduce their mental burden”, conclude the founders of the European Myasthenia Gravis Day.
The burden of the disease is not universally well-understood or recognised across Europe, which creates inequalities in patient care and leaves many patients with underserved needs. The first-ever European Myasthenia Gravis Day is meant to challenge the status quo and is meant to be the kick-off for a broader campaign a broader campaign, in the context of the global MG Awareness month. . The coalition – which was formed in February 2023 – is organizing an event today at the European Parliament to raise awareness about the disease and patients’ needs, but also to share concrete policy propositions for the EU.
The #AllUnitedforMG coalition formulated six concrete recommendations aimed at championing real change for people living with MG and rare diseases, more broadly:
- Expand knowledge and expertise of rare diseases and reduce diagnosis by ensuring that healthcare professionals both GP’s and specialists, such as neurologists and opthalmologists 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 other EU Member States.
- Ensure mutual recognition of MG patients’ disability status and its associated benefits across all EU Member States
- Raise awareness about the disease amongst the broader public by creating a European Day dedicated to Myasthenia Gravis, in coordination with stakeholders in each EU Member State
- Provide patients and caregivers access to resources on the disease and its potential impact to their daily lives
- Promote the creation of centres of expertise across all EU Member States, particularly in Member States where none currently exist.
Up to 58 % of patients suffering from MG may have difficulties in their daily activities, which requires more than 50 hours per week of support from a caregiver. 15.6% of caregivers needed to cut back their working hours, and up to 20,8% of caregivers needed to give up paid employment due to the demands of caregiving tasks. The unpredictability and invisible nature of the disease creates long-term challenges for both the patient and caregiver
“Living with Myasthenia Gravis is a daily battle, where each breath, each movement, is a continuous effort. The constant physical limitations and emotional strain take a toll not only on me, but on my loved ones as well,” says a patient. “Furthermore, our illness is invisible and hard to understand. Therefore we are very happy that there is finally a European Myasthenia Gravis Day to put a spotlight on this disease.“