Rare Disease Day Luncheon

Thursday, February 28, 2019

12:30- 2:30 PM | Omni parker house Boston

Registration Deadline: February 15th

Jett Foundation invites families affected by rare disease, industry and academic partners to celebrate Rare Disease Day 2018 at the 3rd Annual Rare Disease Day Luncheon at the Omni Parker House in Boston, MA.

Each rare disease community faces challenges unique to their disorder. This year Jett Foundation’s program will feature our 2019 Volunteer Community Ambassadors and their unique stories and experiences. Jett Ambassadors are moms, dads, grandparents, and even camp volunteers from from around the country.They are active advocates for our children and young people and they act as our eyes and ears in their local communities. During this intimate luncheon, the ambassadors will share their different stories and messages during small roundtable sessions, and be available for question and answer.

Please join us for this unique opportunity to meet with all our Ambassadors over lunch, and gain key insights about their experiences and perspectives on the diagnostic journey, caregiver and patient treatment preferences, goals, and challenges, and clinical trials.

2019 Rare Disease Day Luncheon Sponsors

Rare Disease Day logo and imagery are the intellectual property of Eurordis Rare Diseases Europe, organizers of Rare Disease Day.®