More than 1,600 people have signed a petition calling for greater awareness about Myasthenia Gravis (MG), a rare and often debilitating disease, and would like to see collective action that will enhance management of this chronic condition
The petition that was launched by the European patient coalition All United for MG in March is advocating for improved rights for patients and caregivers, better access to healthcare and enhanced conditions.
- Founded in 2023, All United for MG is dedicated to raising awareness about Myasthenia Gravis (MG) and advocating for the rights of patients and caregivers. Initially launched in 6 countries with the participation of 8 patient advocacy groups (PAG), it has since grown and now includes 16 PAGs across 15 countries.
- Ahead of the second European Myasthenia Gravis Awareness Day on June 2nd, the petition has already garnered 1,600 signatures.
- To accommodate further growth, All United for MG will become part of the European Myasthenia Gravis Association (EuMGA) in July 2024.
BRUSSELS, May 31, 2024 /PRNewswire/ -- There is a notable gap in the understanding and recognition of the severity of MG In Europe, resulting in disparities in patient care. Many patients are left underserved, highlighting the need for heightened awareness about this rare autoimmune neuromuscular disease and its implications for patients and their caregivers.
The renewal of the European Parliament brings fresh opportunities to the MG community to further engage with policymakers and refine their policy asks with regards to the following key proposals:
- The recognition of the disability caused by MG and the facilitation of access to disability benefits within Member States and cross-border when patients are travelling.
- Increased investment in cross-border initiatives to share medical knowledge and expertise, such as the European Reference Networks.
- The adoption of an EU policy framework to tackle rare diseases, providing comprehensive services to speed up diagnosis and access to treatment and care.
- An EU platform to discuss best practice sharing on MG as part of the European Commission's Public Health expert group.
All United for MG has been amplifying the voice of MG patients across Europe since its establishment in 2023 and launched the first European Myasthenia Gravis Awareness Day on June 2nd 2023. Since then , All United for MG has been working to improve the visibility, recognition, and treatment of MG and other rare diseases.
This year, for the second annual European MG Day, All United for MG is encouraging people from across Europe to support the petition on change.org and to advocate for changes in the management of rare diseases care, especially in Myasthenia Gravis (MG). The petition has already garnered over 1,600 signatures, reflecting widespread support for the MG community and the pressing need for policies to address the most critical issues faced by MG patients. The goal is to collect a total of 5,000 signatures.
"The burden of MG is not universally understood or recognized across Europe. Raising awareness and amplifying the patient voice can drive meaningful change. The aim of the petition is to mobilize every citizen to support patients and the broader rare disease community. By uniting in this collective effort, we can foster greater understanding, advocate for improved resources, and ultimately enhance the overall quality of life for those affected", added Lutgarde Allard, President of EUMGA.
All United for MG was established with the institutional support of argenx and has been growing rapidly ever since. Starting in July 2024, the European Myasthenia Gravis Association (EuMGA) will assume leadership of All United for MG and is seeking additional support to further its mission.
If you want to express your support by adding your signature, you can access the online petition via this link: https://www.change.org/AllUnitedforMG.
About Generalized Myasthenia Gravis
Generalized myasthenia gravis (gMG) is a rare and chronic autoimmune disease where IgG autoantibodies disrupt communication between nerves and muscles, causing debilitating and potentially life-threatening muscle weakness. Approximately 85% of people with MG progress to gMG within 24 months, where muscles throughout the body may be affected. Patients with confirmed AChR antibodies account for approximately 85% of the total gMG population.
About AllUnited4MG
Launched in February 2023, AllUnited4MG is a coalition that brings together patient organizations and representatives from different European countries that believe in a vision of a world where every individual with MG is understood, supported, and equipped to live their best lives despite the burden of the disease.
Find out more at allunitedformg.eu.
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