Archive: November 2019

Rare Drug Disease Pricing – How We Got Here and Steps to Minimize Your Financial Burden

Posted on November 13, 2019

November 13, 2019 @ 7:00 pm – Click here to view the webinar Dr. Minikel will speak on the economics of rare disease drug development and factors on price setting. This informational and fascinating review on pharmaceutical economics will be followed by a brief discussion on appealing insurance claim denials to minimize financial struggles for families. A question and answer session will […]

16th Annual WORLDSymposium

Posted on February 10, 2020

February 10, 2020 – February 13, 2020 @ All Day – This symposium is designed for basic, translational and clinical researchers, patient advocacy groups, clinicians, and all others who are interested in learning more about the latest discoveries related to lysosomal diseases and the clinical investigation of these advances. CLICK HERE TO REGISTER

Rare Disease Week on Capitol Hill 2020

Posted on February 25, 2020

February 25, 2020 – February 28, 2020 @ All Day – We are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2020 in Washington, DC from February 25-28, 2020! Registration for Rare Disease Week on Capitol Hill 2020 will open on January 3, 2020. The Rare Disease Week on Capitol Hill Legislative Conference and Hill Day […]