Other events are planned throughout New England and in fact the world! See http://www.rarediseaseday.us/events/locations/ and use the FILTER to limit the listing to one state.
This Massachusetts event is organized and sponsored by the MassBio and the MGH Center for Rare Neurologic diseases. MassBio is helping to schedule appointments for Massachusetts citizens to visit with their legislators to help raise of genetic services issues they can help with. Please contact Susan Martin at MassBio.
MassBio, The MGH Center for Rare Neurologic Diseases & The MGH Frontotemporal Disorders Unit
The Massachusetts Biotechnology Council (MassBio), a not-for-profit organization that represents and provides services and support for the Massachusetts biotechnology industry, is the nation’s oldest biotechnology trade association. Founded in 1985, MassBio is committed to advancing the development of critical new science, technology and medicines that benefit people worldwide.
Visit www.massbio.org for more.
The Center for Rare Neurological Diseases (CRND) at Massachusetts General Hospital aims to eradicate rare disorders of the nervous system by leveraging the power of biological insights towards design and implementation of clinical trials. The CRND envisions a paradigm shift in rare diseases. It seeks to change rare diseases from unknown isolated disorders to become empowered communities that receive support through resource and trials. The CRND will provide a platform to realize this vision, leverage biological insights, mentor young investigators, empower stakeholders and improve care for many disenfranchised patients with rare disorders.
Director: Florian Eichler, MD
The Frontotemporal Disorders (FTD) Unit at Massachusetts General Hospital is a comprehensive clinical-research unit focused on Frontotemporal Degeneration and related disorders. Our team is committed to sophisticated, compassionate, interdisciplinary care of patients with neurodegenerative disorders. FTD Unit clinicians work closely with families to develop treatment plans that include medication, therapeutic services and an environmental approach to modifying behaviors. Meeting the unique needs of patients and caregivers, these plans can help improve quality of life for patients and families and reduce suffering as they navigate the progression of FTD.
Director: Bradford Dickerson, MD