Allied in the fight against MECP2 Duplication Syndrome
For every family navigating MECP2 Duplication Syndrome, we’re here. We’re building a global community that supports families, champions research, and helps bring better treatments closer to reality.
Five organizations,
one global mission
MECP2 Duplication Global (MDG) is an international group of five non-profit organizations connected by one common goal: improving the lives of those affected by MECP2 Duplication Syndrome (MDS).
Coming together to advance research, care, and outcomes, the alliance serves to:
- amplify the voice of the global patient community
- accelerate diagnosis and increase understanding of MDS
- support affected families worldwide
Your story could help shape the future of MECP2 Duplication Syndrome
REMEDS is a global patient registry and medical survey platform for MECP2 Duplication Syndrome (MDS). It brings together families, researchers, clinicians, and industry partners worldwide to advance research, develop treatments, and improve care.
The registry is a secure database where people living with MDS can be represented and counted. It helps build a clearer picture of the global community and supports research planning.
REMEDS also includes medical surveys that collect clinical data, demographic information, and real-world experiences from patients, caregivers, and healthcare professionals. These surveys keep the registry up–to–date and provide deeper insights into MDS, helping shape research priorities, improve clinical understanding, and support the development of treatments.
How we’re driving progress
By connecting families, researchers, clinicians and advocates around the world, we help drive scientific progress, strengthen support for the MDS community, and ensure patient voices help shape the future.
Accelerating research worldwide
Working together across countries and organizations, we help researchers build the evidence, partnerships, and global infrastructure needed to move promising discoveries towards clinical trials—and ultimately, approved treatments. Together, we can speed up progress towards future treatments.
Supporting families at every step
We connect families with trusted local organizations, practical resources, and an international patient community that understands the challenges of living with MDS—offering support from the point of diagnosis along the entire care journey.
Advocating for lived experience
Families and caregivers bring essential knowledge that research alone cannot provide. Our advocacy efforts ensure their lived experiences help shape research, clinical development, regulatory discussions, and industry decisions, so future treatments reflect the needs of the people they are designed to help.
About MECP2 Duplication Syndrome
MECP2 Duplication Syndrome (MDS) is a rare, progressive, X-linked neurodevelopmental disorder, primarily diagnosed in boys with a smaller community of affected girls.
Typically associated with
severe intellectual disability
drug-resistant epilepsy
recurrent respiratory illness
gastrointestinal symptoms
MDS often results in early mortality for children and currently has no cure.
This presents a profound unmet medical need for patients and their families—and it is why our global alliance exists.
Stories from our community
MECP2 Duplication Global brings families like mine together from around the world. We know we aren’t alone as we battle MECP2 Duplication Syndrome.
Stories from our community
Being part of a global alliance means a great deal to us; the hope for a treatment for MECP2 Duplication Syndrome drives our community. Together, we are many!
Stories from our community
Unity is strength. MDG is proof that people who care, together, are unstoppable.
Stories from our community
MECP2 Duplication Syndrome is rare and challenging, but it also brings hope. Through MECP2 Duplication Global, small voices become one strong voice, and small hopes grow into greater hope. Together, let’s keep our children smiling.
Stories from our community
Being part of MECP2 Duplication Global has shown me the power of a worldwide community. Connecting with families across the globe who understand our journey has been both reassuring and inspiring.
Help make a difference today
Whether you add your voice to our REMEDS patient registry, share our work, or connect with our community, every action helps families facing MECP2 Duplication Syndrome feel less alone and brings us one step closer to reaching our shared goals.
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