đź“ž Livestream the Rare Disease Congressional Caucus Briefing December 4th

For those who can not make it to Washington, DC next week, we’re pleased to announce a livestream will be available for the Rare Disease Congressional Caucus briefing.

Rare Disease Legislative Advocates with honorary co-hosts Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN), Co-Chairs of the Rare Disease Congressional Caucus, invite you to a lunch briefing:

The Diagnostic Odyssey

Tuesday, December 4, 2018, from 12:00 p.m. until 1:00 p.m.

121 Cannon House Office Building

Complimentary lunch included

Registration available on-site

Register for the event livestream by clicking this link.

 

If you have questions about the briefing, please email Shannon von Felden, RDLA Program Manager, at svonfelden@everylifefoundation.org.

đź“… Register for 2018 RARE Patient Advocacy Summit

The RARE Patient Advocacy Summit is the can’t-miss event of the year for rare disease stakeholders. The Summit will take place October 3-4 at the Hotel Irvine in Irvine, California, and it is the largest gathering of rare disease patients, advocates and thought leaders worldwide.

Take advantage of this opportunity to connect and learn from more than 200 experts in rare disease leading 100 educational sessions. This year, the Summit offers four specialized learning tracks to help you spark change including:

  • Living with a life-altering condition, before and after diagnosis
  • Becoming successful architects of your health and that of your disease community
  • Building on advances as a patient, partner, and driver in drug development
  • Learning about the latest science and technology that drive innovation

The RARE Patient Advocacy Summit offers many unique opportunities to support the rare community by participating in the largest educational event for rare patients and advocates. Together, we are strong. Join Global Genes, partners and rare disease community members from all walks of life to become equipped with the tools needed to persevere and thrive on our paths forward!

Click here to register now:

 

Click here to view and download an up-to-date PDF of our full Summit Agenda. New speakers and sessions will be added each week, so be sure to check back before finalizing your Summit plans.

Each year, dozens of exhibitors in the rare disease space congregate at the Summit to provide patients with information, tools and resources to help them along their journey. If you’d like to register as an exhibitor, click here. Space is limited so be sure to register ASAP.

We’re so glad you are joining us at the Summit! We’ve put together a helpful list of places to stay, directions, and everything else out-of-towners need to know to plan their trip. Click here for a comprehensive Summit travel guide.

Can’t attend the Summit in person? Don’t worry, you can view the event on Livestream! Click here to register.