"All United for MG" coalition launches a petition to advocate change in Myasthenia Gravis

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Mar 06, 2024, 05:00 ET

In the context of Autoimmune Awareness Month, the coalition of patients suffering from Myasthenia Gravis (MG) "All United for MG" urges citizens throughout Europe to unite in instigating positive change and enhancing Myasthenia Gravis management. All United for MG is officially launching a European petition to advocate for better rights for patients and their caregivers, improved access to healthcare and enhanced conditions.

All United for MG was founded in 2023 to raise awareness about gMG and strengthen patients and their caregivers' rights for improved quality of life, better care and access to resources on the disease.
The petition aims to bring changes in the gMG and broader Rare Disease community, calling for a renewed Rare Disease Plan under the next European Commission.

BRUSSELS, March 6, 2024 /PRNewswire/ -- Following Rare Disease Day and in anticipation of the European elections, All United for MG has undertaken the initiative to mobilize society, initiating transformative changes for the patient community. Since its establishment in 2023, All United for MG has been amplifying the generalised Myasthenia Gravis (gMG) patient voice across Europe. A Call for Action, launched with European parliamentarians Tomislav Sokol and Istvan Ujhelyi in June 2023 during the first-ever Myasthenia Gravis Day, contains six actionable policy recommendations for the improvement of the visibility, recognition and treatment of Myasthenia Gravis (MG) and other rare diseases. These recommendations were supported by over 30 stakeholders, including 11 members of the European Parliament, healthcare professionals and Patient Advocacy Groups (PAGs). All United for MG is now intensifying its efforts and seeks the support of all citizens across Europe by launching a petition on change.org, to encourage the civil society to support and advocate for changes in the management of rare diseases care,especially in generalized Myasthenia Gravis (gMG). The ambition is to collect between 5.000 - 10.000 signatures in the lead-up to the second Myasthenia Gravis Awareness Day on June 2^nd and the European elections.

gMG is recognized as a rare chronic autoimmune disease that imposes substantial challenges on the majority of individuals affected. It causes complex and chronic physical symptoms that weaken the body's muscles and can be potentially life-threatening. Affecting facial expressions, vision, speech, chewing, swallowing, and breathing, it makes daily movements exhausting and challenging. As a rare disease, it remains difficult and time-consuming to diagnose.

"Taking action at European Union level is extremely important to raise awareness and increase interconnectivity among all Member States. This enables rare disease patients and healthcare professionals from different countries to exchange data, ensuring better understanding for the disease and better social support. It is thus crucial to collectively support All United for MG initiative to underline the significant impact of MG on patients' daily lives, as well as to their loved ones. I would also like to encourage all EU citizens to sign the petition, stressing the importance of raising awareness of MG and defending the rights of those affected, and bringing positive change to the rare disease environment in Europe" said Stelios Kympouropoulos, Member of the European Parliament.

"gMG is a debilitating neuromuscular disease with complex physical symptoms that, for the most severely affected patients, even necessitate the assistance of a caregiver," added Prof. dr. Jan De Bleecker, Ghent University Hospital and Ghent University. "There remain unmet needs in rare disease, and as healthcare professionals, it is crucial for us to ensure that the broader healthcare community comprehends the intricacies of the disease for improved management."

"The burden of the gMG is not universally well-understood or recognised across Europe. Raising awareness and elevating the patient voice can make a meaningful difference in driving change. The aim of the petition is thus to mobilise each citizen to lend their support to patients and the broader rare disease community. By uniting individuals in this collective effort, we can foster a greater understanding, stand up for improved resources, and ultimately enhance the overall quality of life for those affected" said Lutgarde Allard, Board Member at EUMGA.

"Rare diseases often struggle for visibility in political discourse, making the All United for MG petition all the more important. This Call to Action urges citizens to join hands in encouraging positive change. In the current political environment, this petition serves as a powerful tool to highlight the necessity of prioritizing Myasthenia Gravis, neuromuscular disorders and more broadly rare diseases in the policy agenda" added Jean-Philippe Plançon, President of EPODIN.

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.

SOURCE All United for MG