All United asks public to support MG patient, caregiver rights’ petition
Group aims for up to 10,000 signatures by people across European Union
All United for MG has opened a petition in Europe supporting myasthenia gravis (MG) patient and caregiver rights, including those promoting a higher quality of life and access to better healthcare and resources.
The petition hopes to gain momentum following Rare Disease Day in February and ahead of the European Union’s (EU) parliamentary elections in June, where discussions are underway regarding the introduction of a long-awaited “EU Action Plan on Rare Diseases.”
All United aims for between 5,000 and 10,000 petition signatures in the lead-up to the Myasthenia Gravis Awareness Day on June 2, and the June 6-9 EU elections.
“Failure to act risks perpetuating the current challenges faced by patients and caregivers, including misdiagnosis, limited access to specialised care and inadequate support systems,” the petition notes.
Myasthenia gravis patients seen to lack resources, medical expertise
“It is … crucial to collectively support All United for MG initiative to underline the significant impact of MG on patients’ daily lives,” Stelios Kympouropoulos, a member of the European Parliament, said in an association press release.
“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,” Kympouropoulos added.
With a focus on generalized MG (gMG), the petition builds on a “call to action” launched on 2023’s first European Myasthenia Gravis Day by All United with the parliamentarians Tomislav Sokol and Istvan Ujhelyi. Its recommendations were supported by over 30 stakeholders, including European Parliament members, healthcare professionals, and patient advocacy groups.
The petition focuses on six policy recommendations aimed at boosting the visibility of MG and other rare disease patients, the recognition of their disorders, and work into rare and MG disease treatments.
One recommendation calls for better medical care and a faster diagnosis process for patients, in part by improving the knowledge and expertise of healthcare professionals and the resources available to them. Another touches upon the need for greater cooperation between countries in rare disease treatments, noting that patients should eligible for therapy reimbursements regardless of which EU member state they are treated in.
“Taking action at European Union level is extremely important to raise awareness and increase interconnectivity among all Member States,” Kympouropoulos said. Among other benefits, such cooperation “enables rare disease patients and healthcare professionals from different countries to exchange data, ensuring better understanding for the disease and better social support.”
Petition calls for an MG patient ‘disability card’ valid throughout the EU
Raising awareness about MG is key for widening the social care and support available to MG patients. One proposal is to create a European Day dedicated to MG, in coordination with stakeholders in each EU member state. Another would create an “EU disability card” recognized across all 27 member states (eight now have “voluntary use” of such a card), ensuring that MG patients’ disability status and its associated benefits are more widely acknowledged.
To overcome obstacles to patients’ and caregivers’ rights, the petition calls for greater access to resources helpful in managing the disease and enhancing life quality. It also proposes the creation of expert care centers across all EU member states, especially in those where none now exist.
All United for MG, founded in 2023, is a coalition of European patient associations and other groups working to raise awareness about gMG, and to support and expand patient and caregiver rights.
“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,” said Lutgarde Allard, a board member of the European Myasthenia Gravis Association.
“The aim of the petition is thus to mobilise each citizen to lend their support to patients and the broader rare disease community,” Allard said. “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.”
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