Author Archives for Devon

Every Diagnosis Matters

October 17, 20199:17 pm Published by Comments Off on Every Diagnosis Matters

This year, Illumina brought their “Every Diagnosis Matters” booth to the 2019 RARE Patient Advocacy Summit. Summit attendees were invited


Highlights from the 2019 RARE Patient Advocacy Summit

October 4, 20196:08 pm Published by Comments Off on Highlights from the 2019 RARE Patient Advocacy Summit

More than 900 rare disease community members came together at the 2019 RARE Patient Advocacy Summit and left with actionable


Tips and Tricks for the 2019 RARE Patient Advocacy Summit

September 11, 20194:28 pm Published by Comments Off on Tips and Tricks for the 2019 RARE Patient Advocacy Summit

The 2019 RARE Patient Advocacy Summit is jam-packed with informative sessions, onsite events, networking and more. We’re breaking down all


A Letter from Kimberly Haugstad

September 4, 20193:38 pm Published by Comments Off on A Letter from Kimberly Haugstad

Dear Rare Disease Community,  I am so excited to be stepping into the role of CEO for Global Genes –


Stay Social at the Summit

August 13, 20199:33 pm Published by Comments Off on Stay Social at the Summit

Exercise, socialize, and more at the 2019 RARE Patient Advocacy Summit Namastay Rare Join rare disease advocate, Elisabeth Parker, Thursday