Solidarity and collaboration for neuromuscular diseases

Solidarity and collaboration for neuromuscular diseases

Jean-Philippe Plançon, the President of the European patient organization for Dysimmune and Inflammatory Neuropathies, is committed to the All United for MG petition. He highlights the importance of solidarity between neuromuscular disease families, as what benefits myasthenia gravis can also have a positive impact on other neuromuscular diseases, especially on dysimmune and inflammatory neuropathies.

Jean-Philippe highlights the challenges of managing rare diseases in the European Union. Diagnostic delays are still too long, and access to treatment when it does exist is often limited. Furthermore, access to resources for patient care is unequal across countries. European reference networks are crucial in meeting these challenges by providing rapid access to expertise within the EU.

Jean-Philippe has been suffering from a neuromuscular disease for 25 years. His personal experience initially motivated his involvement in the neuromuscular field. Diagnostic wandering, access to treatment difficulties, lack of visibility and consideration regarding inflammatory neuropathies and patient needs he has experienced, inspired in 2006 the creation of a French association and its involvement at the European level.

Jean-Philippe emphasizes the importance of current reviews of pharmaceutical regulations, particularly those concerning brand-name substances, in regard to the potential benefits of greater involvement by the European Commission. He stresses the need for these revisions to consider patients' needs and contribute to equitable care.

When referring to collaboration between healthcare players, the author highlights the European reference networks. These networks bring together doctors, clinicians, researchers, patient organisations, and gradually pharmaceutical companies. The author stresses the importance of all these players learning to work together for greater efficiency.

In conclusion, Jean-Philippe Plançon wishes to convey the message that giving priority to myasthenia gravis could be the gateway to a broader approach to neuromuscular diseases such as dysimmune and inflammatory neuropathies.

He insists that what is beneficial for one disease family can be beneficial for others as well.

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