REMEDS is an initiative by DupMECP2 – Lasst uns MDS heilen, a European based non-profit organization, dedicated to supporting the global MECP2 Duplication Syndrome (MDS) community. Our REMEDS team includes a dedicated medical doctor, Dr. Gröppel, and other MDS experts committed to advancing research and patient care for MECP2 duplication syndrome.
With REMEDS, we aim to create a comprehensive, interactive, and multilingual platform where data is treated with the highest standard of security and privacy of patients’ data, with GDPR-compliant storage on a European server.
Our goal is to optimize communication and exchange of information to enhance understanding of the disease, support treatment research and provide crucial support to families affected by MDS. By uniting patients, caregivers, healthcare companies, and researchers in one single platform, we encourage a collaborative environment that enhances understanding and management of MDS.
REMEDS stands for REgister and Medical Survey for MECP2 Duplication Syndrome. It is a global register designed to collect and manage data from the MDS community. This innovative platform allows for the registration and surveying of patients affected by MECP2 Duplication Syndrome exclusively. By gathering valuable information directly from caregivers through surveys, REMEDS aims to understand more accurately, the disease, its true incidence and progression. It also enables direct exchange between patients, caregivers, and researchers, promoting a supportive and informed community.
The surveys and patient register are core components of REMEDS.
The patient register is a secure database where patients with a specific disease can register and share detailed information such as patient demographics, genetic information, and medical history. This register helps track the incidence and progression of MECP2 Duplication Syndrome globally, thereby providing a better understanding of the disease.
Surveys are designed to gather detailed information from patients, caregivers, and healthcare professionals about their experiences with MECP2 duplication syndrome. The surveys help keep the register up to date, while providing researchers and healthcare companies an overview on the disease, ultimately leading to improved treatments and care strategies.
By participating, you contribute to improving the understanding and treatment of MECP2 duplication syndrome. Your involvement helps to accelerate the development of new therapies and enhances the quality of care for all affected children. Additionally, you gain access to a supportive community and stay informed about the latest scientific advancements and research findings. By sharing your experiences and data, you play a crucial role in shaping the future of medical research and patient care for MECP2 duplication syndrome.
Each registration is reviewed and validated by a dedicated REMEDS doctor ensuring that all patients have MECP2 duplication syndrome. Once a diagnosis is confirmed by our doctor, caregivers receive notifications about scientific news and are invited to participate in surveys designed by pharmaceutical companies, scientists, and healthcare professionals.
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Sign in to a private space using multifactor authentication tools.
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Provide detailed patient information and attach proof of diagnosis, for validation by REMEDS doctor.
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Once validated, access the platform and manage your patient information.
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Access and participate in open surveys, view the history of actions, and contribute to ongoing research efforts.
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