RNE's mission is to bring together New England patients, families and providers touched by rare and complex disorders. We offer educational opportunities, create awareness of available resources, and build foundations for support to improve patient quality of life.
RNE aims to bridge the gap between patients and families, clinics and clinicians, and the many resources available to them by existing government programs, advocacy organizations and patient groups, and state agencies, in the New England area.
RNE offers patient and family support, highlights our region's medical and community resources, connects patients to appropriate national support and advocacy groups, and creates educational opportunities for New England patients and providers to advance care and quality of life for rare disorder patients and their families.
RNE strives to increase awareness that patients with rare and complex disorders live, work, attend school, and participate in communities across New England. Individually, we may be “rare,” but together we are a vibrant, strong community with much to offer!
RNE provides education about issues affecting rare and complex patients and their families to the medical community, the education system, regional legislators, workplaces, and others. We address topics such as complex care coordination, ADA and IEP accommodations, medical insurance problems, and more.
RNE coordinates opportunities for patients, families and others touched by rare and complex disorders, to learn about regional and national resources. We host meetings and events featuring healthcare providers, advocacy organizations, and others who devote time to complex disorders. We help patients and families find and utilize resources, empowering them to overcome obstacles in care and community life.