​Disclaimer: The information on this website is not intended to diagnose or treat any condition. Information should be regarded as general guidance only.  RNE shall not be liable for any action taken as a result of information taken from this site. RNE shall not be responsible for any information contained on sites linked to RNE's pages. Patients should consult their doctors before starting, stopping, or changing any medical treatments.
RNE founder, Julie Gortze sharing about RNE's mission on Mansfield Cable Station. Click HERE to hear more!
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Welcome to Rare New England! 

We hope you enjoy your visit to our site and find what you are looking for. If you need more information, please contact us at Info@rarenewengland.org.
2017 - RNE Year in Review
Would you like to help RNE raise funds to enable programs and services for the rare disease community? Contact us at Info@rarenewengland.org 
RNE has began production of a cable show series about rare and complex diseases. This program will offer information, education and highlight resources available to all stakeholders living and working in the rare disease community.
​"When you hear hoofbeats look for horses not zebras" --- Dr Theodore Woodward. Medical students have been taught for decades to look for the common ailment when a patient presents with symptoms. After all, rare diseases are rarely seen and the patient probably has a common problem.
However, in the world of rare diseases, many patients are overlooked and consequently spend years in consults before finally being diagnosed. For this reason, we asks that zebras always be considered.  
Rare New England thanks Boston University Genetic Counseling Program student, Katie Dunn, for this fabulous graphic of our new RNE New England zebra pattern!​
NEXT STOP - BOSTON, March 30th! Empowered patients, caregivers, and other rare disease advocates standing together can affect change. Join Global Genes and EveryLife Foundation for Rare Diseases at RARE on the Road, a Rare Disease Leadership Tour to connect with other advocates, get tips on how to tell your rare disease story and learn why public policy matters. Topics include:
● Being Seen and Heard: Social Media Strategies to Click and Connect
● What’s on the Legislative Road Ahead? Accelerating Change in the Rare Disease Community
● Detours to Destinations: Navigating Your Rare Disease Landscape

Learn more and register at www.raretour.org.
RNE and NORD are partnering with Reps Kane and McKenna and Sen Feeney to hold a legislative briefing on May 14th at the MA State House! We have a great agenda (below) starting at 10am and attendees will visit legislators following at 11:30am until 3pm.
Click here for more info!