"As a patient advocate who works with rare diseases, an important part of my job is connecting families to local and regional resources. Rare New England has been a wonderful and dedicated resource for rare disease patients and families for several years, and I never hesitate to send my families their way! RNE works hard to provide workshops and information sessions, often featuring local physicians and clinics, helping patients and families explore the latest care information, and making them aware of local medical options and resources. I also appreciate that RNE works collaboratively with other rare disease organizations in New England and around the nation. This gives patients and families an easy way to connect with other medically complex families in their communities, and increases the advocacy and awareness power of all rare disease patients throughout the region. RNE is a fantastic group, and a great resource for the New England area."
- Jessica Shriver, MATh, MSBe