RNE Annual Conference

ENERGY IN ACTION - EPISODE 032

RNE Annual Conference

Rare New England is a nonprofit in Massachusetts who serves the rare disease community in New England. Julie Gortz, Founder and Volunteer President of Rare New England, is sharing about the organization, how it started and about their upcoming conference on October 23rd.

EPISODE HIGHLIGHTS

What is your annual conference about?

While there are a lot of resources available to patients, they don't always know about them. We hold an annual conference each year in a New England state, but it will be virtual this year. The theme for the conference is resilience because the rare disease community is resilient, even still through the challenges of the pandemic. Attendance is free for patients and caregivers.

What is Rare New England's strategic plan?

We started as a support group, not a nonprofit and people came to meetings from states away. I asked for donations to help feed lunch to the attendees, which is difficult to collect without being a nonprofit. We didn't know the potential we could bring from the New England area though the programs we've added. We're still growing and hope to expand the programs we have to be more efficient for families to access.

Can you share about the career fair program?

We have monthly career fairs for medical students to share with them what's happening in the genetic world in hopes that they gain interest and perhaps go into genetics in medical school.

RESOURCES MENTIONED

RNE Annual Conference Registration

https://www.eventbrite.com/e/improving-health-care-experiences-in-the-rare-disease-community-tickets-155702984819

Annual Conference Speakers & Agenda

https://www.rarenewengland.org/2021

Rare New England

https://www.rarenewengland.org/

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