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ONLINE REGISTRATION IS NOW CLOSED. On-site registration will be available in the Great Hall at the Massachusetts State House.
See you Monday!
Join MassBio, The MGH Center for Rare Neurologic Diseases, The MGH Frontotemporal Disorders Unit, member companies, patient groups, patients and legislators to recognize Rare Disease Day.
Rare Disease Day calls attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world.
The Commonwealth joins a coalition of organizations recognizing the day, being coordinated by the National Organization for Rare Disorders (NORD), which includes patient organizations, professional societies, government agencies, medical researchers, pharmaceutical and biotechnology companies, and patients.
Please join us to recognize Rare Disease Day and the research being done in Massachusetts to treat and cure rare disease. Together, we can raise awareness of rare disease.
Would you like to visit with your legislator to advocate for Rare Disease? Email Susan Martin for help in arranging legislative meetings!
Interesting in being listed as a Partner Organization for Rare Disease Day? Email us!
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.
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.
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.
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