Recently Diagnosed
Connect with Us
If someone close to you was recently diagnosed with Multiple Sulfatase Deficiency (MSD), you likely have many questions. “What is MSD?” “Is there a treatment?” “Who are the experts?” You are not alone. MSD is expected to occur in 1 in 500,000 people and with 14 billion people on this planet, we expect there to be 28,000 MSD incidences worldwide.
We want to connect with you! As an international organization, we are currently connected with families from the United States, Argentina, Brazil, China, England, Finland, France, Germany, India, Ireland, Poland, Saudi Arabia, Scotland, Spain, Sweden, Turkey, and Ukraine.
We have a tight-knit community across the world who support and advocate for one another, and who serve as a source of information and resources. We have a number of resources available to all of our MSD families, and we want to ensure that no one feels isolated or lost.
Patient Resources
When you reach out to us, our Family and Patient Advocate will be in touch with you within 24 hours with initial information and a request for a Zoom call. During that meeting, we will learn more about your family and your immediate needs. Additionally, after onboarding, a number of resources will become available to you such as free mental health services, monthly family support meetings, a private MSD Family Facebook group, research opportunities, and more.
We Are Eager to Connect with Families Worldwide
The United MSD Foundation serves families around the world.
We have materials translated into the following languages and are working to expand our coverage.
Arabic | Mandarin Chinese | Portuguese | Russian | Spanish
We have virtual interpreters ready to assist families and ensure everyone can participate in all conversations and events.
Let’s Connect
Connect with MSD families and get valuable information from medical researchers and doctors.