For years, families were in the dark about causes and treatments, but we’ve fought tirelessly to answer their questions. Today, we are the primary source for up-to-date and trustworthy information for patients and family members, as well as healthcare providers and researchers. If you or someone you love has Marfan syndrome or a related disorder, we offer easy-to-understand materials to help you on your medical journey. If you are a doctor or other healthcare provider, we have resources for your office, diagnostic tools, and management overviews. If you are a researcher, we offer research grant opportunities and other vehicles to help you advance knowledge on Marfan syndrome and related disorders. Please explore the links below to learn about our resources.
For Patients & Families
If you are seeking a diagnosis, recently diagnosed, or facing new challenges, you are likely to have questions. We have resources and answers to help you in your medical journey.
For Healthcare Professionals
We offer diagnostic tools and treatment guidelines, especially for doctors who don’t see a lot of patient with Marfan syndrome and related disorders. In addition, we provide resources to complement your medical services.
Our request for proposals gives researchers an opportunity to secure critical funding. We also facilitate research in other ways.