RARE New England

The mission of RARE New England 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 and support the professional needs of healthcare providers.

These include:

• Offering patient and family support
• Highlighting our region’s medical and community resources
• Connecting patients to appropriate national support and advocacy groups
• Creating educational opportunities for New England patients and providers to advance care and quality of life for rare disorder patients and their families
• Increasing awareness that patients with rare and complex disorders live, work, attend school, and participate in communities across New England
• Providing education about issues affecting rare and complex patients and their families to the medical community, the education system, regional legislators, workplaces, and others
• Addressing topics such as complex care coordination, ADA and IEP accommodations, medical insurance problems, and more

Individually, we may be “rare,” but together we are a vibrant, strong community with much to offer!