Join our patient registries to advance research!
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In order to improve care and develop treatments, clinicians and researchers need to have a better understanding of Malan syndrome. Natural history studies collect real-world data that is essential for research and understanding how a disease develops over the course of a lifetime.
A note to our community and supporters:
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All corporate documents are available here or upon request per applicable state and federal laws. From the inception of this organization, the Board has consulted with experienced nonprofit professionals to make sure all legal requirements and best practices for nonprofit governance are adhered to. The Board will continue to seek professional services and guidance as the organization grows.