15 May World MPS Awareness Day

MPS LH Association is drawing attention to the needs of individuals with mucopolysaccharidosis and similar lysosomal storage diseases on the occasion of 15 May World MPS Awareness Day. Due to the coronavirus pandemic, the association is conducting its awareness activities this year through social media, launching awareness campaigns under the hashtags #canyousee and #ifnoticeme. MPS LH Association President Muteber Eroğlu stated on the matter: "These diseases have long been neglected and unfortunately always sidelined. Individuals with rare diseases have been left to loneliness and despair. As a patient's family member myself, I have experienced this situation. As an association, we aim to bring together those fighting this disease, everyone living with the rare and sharing hope. Within the scope of 15 May World MPS Awareness Day, we conduct events every year, and this year we have moved them to digital platforms due to the pandemic. We are conducting our activities on social media with the hashtags #canyousee and #ifnoticeme. Our primary objectives are to ensure that patients do not face difficulties in reaching diagnosis and treatment, that they can receive follow-up care at centres equipped specifically for MPS, that they can continue their lives and socialise without being exposed to constantly changing criteria in medication access and the public's strange perceptions, and to clear these difficulties from the already difficult process of fighting the disease."