RARE and Under-Funded

Important Letter from the editor

STOP PRESS
Our apologies—no news today

This is the editor’s welcome that no editor-in-chief wants to write. A welcome to an edition that wasn’t to be. But unlike the iconic 1930’s BBC broadcast that simply stated “There is no news” followed by 15 minutes of piano music to fill the airtime, we have lots of news. In fact, it is hard to remember a more critical time for rare disease, when there was more to say. The sad reality is that due to a perfect storm of industry restructuring, regulatory bottlenecks, election jitters and other influencing factors there seems to have been an industry-wide stall on funding for all things in relation to communication, engagement and advocacy for rare disease in the first two quarters of the year. At RARE Revolution we have not been immune to the impact of this, as we failed to secure an edition sponsor for this our summer edition, making it impossible to deliver.

The topic of our summer issue was to be RARE and Under-served, which should have been a deep dive into the unique challenges of often overlooked and grossly underserved populations within the rare disease community. Those for whom living with rare presents even greater challenges due to geographical, socio-economic, cultural and societal pressures or biases. Of course, the irony of this is not lost on us. Despite seeing the topic of under-served communities as the head liner theme for countless global conferences and speaker sessions and adorning lavish conference set ups over the last 12 months, we failed to attract a single sponsor on this topic. Underserved and underfunded!

Read in full here: https://bit.ly/Summer2024-EditorsWelcome 

Thank you for supporting our RARE Revolution.
Together we are turning the tide for rare disease,


Warmest regards,

The RARE Rev Team
RARE Revolution Magazine