About Us
We are Rare New England, a nonprofit organization serving the rare disease community.
Our 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 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!
It all started when…
Julie Gortze started Mito New England in 2013, after hosting a Mitosocial Under MitoAction in an Attleboro, MA library. Mito New England (MNE) was a local support group for those diagnosed with Mitochondrial Disease that offered in person as well as virtual support and guidance on the various topics related to this disease.
Julie organized events that brought education, information, and resources to this community by inviting speakers with expertise on the subject. Attendees came from all over New England to share experiences in these events and it was through these years that Julie found her Advocacy hat.
Realizing that there are common problems associated with many rare diseases, she made connections with others in the rare disease space that lead to the concept of creating an organization to help all. And so Rare New England (RNE) was born.
Summer 2015 - RNE helped organize an event to raise money for a Mitochondrial Disease clinic at MGH, where Dr. Amel Karaa is caring for patients. Dr. Mark Korson presented on the need for such clinics and what patients and families can do to help.
Spring 2016 - Marjorie Begin from Mansfield Cable Access Channel interviewed Julie on her show, “The Learning Curve”, about Rare New England. Later this connection would lead to RNE producing “The World of Rare Disease”, a show building on our mission to bring education, information and highlighting resources for rare disease stakeholders.
Spring 2016 - During an event presenting, “Challenges in Rare Diseases”, we announced that we had become a nonprofit named “Rare New England” (RNE), to be better able to serve the community mutually affected by the challenges in rare diseases.
Winter 2017 - A Year in Review for Rare New England